The ALS Volunteer Connection

A new and exciting service is being offered through The ALS Association (ALSA) Michigan Chapter. The ALS Volunteer Connection is a state-wide program that has been established to help improve the quality of life for PALS and caregivers. We understand that the role of the caregiver is not easy and can quickly lead to caregiver burnout. It is important to realize that one must take care of himself in order to take care of another person. The aim of the volunteer program is to match volunteers with caregivers in their area to allow caregivers to have some time to themselves. Caregivers may submit a Caregiver Request form and mark off tasks they would like the volunteer to assist with including errands, preparing meals, companionship, and more. If interested in receiving a request form, caregivers can call 866-927-CURE. We are very excited to provide this program and believe it will be of great assistance to those involved.

The ALS Volunteer Connection
“Putting patients and families first”

Steve Langerak Winner of "Family Caregiver of the Year" Award

Jenison Man Selected as Winner of “Family Caregiver of the Year” Award
Steve Langerak awarded Local Prize and $500

Grand Rapids, MI September 8, 2010— The winner of the 2010 “Family CareGiver of the Year” for West Michigan was announced by the Homewatch CareGivers office in Grand Rapids today. Steve Langerak of Jenison was chosen for his unselfish dedication to his wife and for “being her legs, arms, and voice.” Steve will receive the $500 local prize and will be among the finalists for the title of National Family Caregiver of the Year and a $5000 prize.

Homewatch CareGivers commissioned the award because it became crystal-clear that the family caregiver is usually under-appreciated and in need of moral support. “Everyday”, said Jeff Swain, President of Homewatch CareGivers of West Michigan, “our team sees first-hand the devoted love and kindness family caregivers provide to their mothers, fathers, siblings, children, and spouses. Most of the stories are especially poignant. The selection panel chose Steve’s story because of his unbelievable sacrifice and dedication to his wife, an A.L.S. patient.”

Steve Langerak had been married for 40 years to his wife, Sally. When Sally was diagnosed with ALS, Steve chose to leave his job because he wanted to spend more time with his wife. Steve completely rearranged his life to ensure Sally received the love, care, and attention she needed, which quickly became round-the-clock care. Steve was adamant about having her stay in their home, despite the fast-progressing disease that left her unable to do anything on her own. In addition to tube-feeding her, he took care of every one of her personal needs, including dressing, toileting, and grooming; he worked tirelessly to keep her spotless. Handling all the household duties, navigating the health care world, and overcoming obstacles to obtain resources and equipment could have been a full-time job by itself.

Tragically, Sally passed away in August of this year. Carole Black, Steve’s mother-in-law, said that Steve “never complained and never asked for help. He was her legs, arms, and voice. If it wasn’t for Steve, I know that Sally would not have lived as long as she did. ”

Steve takes his tremendous sacrifices in stride. He said that he did things for her that he should have done 40 years ago. “You shouldn’t wait until a disease like this comes along to take care of someone you love.”

Denise George, patient services co-coordinator at the A.L.S. Association of Michigan, nominated Steve. A select panel of local experts – including representatives from the Gerontology Network, Senior Neighbors, and The Alzheimer’s Association – was assembled to vote on the award.

The National Family Caregiver of the Year will be announced in October, by Homewatch International in Denver. For more information on this program or Homewatch CareGivers, visit www.homewatchcaregivers.com/grand-rapids.

Heath Care Reform Webinar this Week

The ALS Association Advocacy Department would like to invite people with ALS
and their family members and caregivers to join us for an informative
webinar about the new health care reform law enacted earlier this year. The
webinar will provide a general overview of health care reform and will
include a slide presentation by the Advocacy Department.

This is an opportunity for you to begin to learn how some of the key
elements of health reform will impact people with ALS and their families as
the law is implemented over the coming months and years. It also is an
opportunity for you to ask questions you may have about health care reform.

WHEN: Thursday, September 16 at 12:00pm ET

WHAT: Health Care Reform: What it Means for People with ALS and their
Families

HOW to Access the Webinar Presentation:

To join the webinar and view the presentation on your computer, go to:

https://alsa.webex.com/alsa/j.php?ED=139908717

&UID=1130829407&PW=NMjdjYzNlYzc3&RT=MiM0



Space is limited to the first 200 participants so please plan to login early
to secure your spot.



To join the audio conference:

Call-in toll-free number (US/Canada): 866-699-3239

Meeting Number: 821 586 154

Meeting Password: TopicCall2010

If you have any questions, please contact the Advocacy Department at
advocacy@alsa-national.org. We look forward to you joining us for this
webinar.

The ALS Association Announces New Grants for Research

The ALS Association, Michigan Chapter is thrilled to learn that through the August 2010 grant cycle, The ALS Association will provide grant funding to 12 worthy projects.

Researching everything from biomarkers to detect ALS to new ways to deliver stem cells, the scientests receiving funding will undoubtedly have great impact on the journey towards meaningful treatments and, eventually, a cure to ALS. For summaries of the funded projects, visit http://alsa.org/news/article.cfm?id=1666 .

This is an exciting time for ALS research. For the latest news on what is happening in the scientific community, watch the ALSA website or contact us for email updates: kristen@alsa-michigan.org or denise@alsa-michigan.org.

Michigan Chapter August Newsletter

Open publication - Free publishing

Educational Conference

Respiratory Issues and Equipment Commonly Seen with ALS Patients.

Presented by Airway Oxygen Inc. Home Medical Equipment & Philips Respironics

Please join us for this free educational conference presented by Mark Orlikowski of Airway Oxygen and Daryle Sawyer of Philips Respironics. For those with ALS, respiratory issues are probably the most serious of medical complications. Mark and Daryle will be addressing this topic and some of the equipment that is currently available.

Date & Time: August 4th 2010 from 6:30pm-8:00pm.

Located at

Munson Community Health Center Classrooms A & B.
550 Munson Ave
Traverse City, 49684

Mark Orlikowski, LRT
Branch Manager
Airway Oxygen Inc.
1364 Trade Centre Drive
Traverse City, Mi 49686
morlikowski@airwayoxygeninc.com

Daryle S. Sawyer RRT/LRT
Respiratory Sales Specialist
Sleep and Home Respiratory Group
Philips Home Healthcare Solutions
1001 Murry Ridge Lane, Murrysville PA 15668
Mobile #. 616-610-0132

*Please RSVP to Denise George at the ALS Association if you plan to attend. There is no cost and friends and family are encouraged to join
616.459.1900

Family Caregiver of the Year

Award to Recognize Kent County Family Members Making Personal Sacrifices

Annual Program Awards $500 Local Prize and $5,000 National Grand Prize to Nominated CareGivers Deserving Recognition

Grand Rapids, MI July 7, 2010 -To recognize the millions of family members caring for loved ones across America, Homewatch International has launched its "Family Caregiver of the Year" award program for 2010. Any individual can nominate a caregiver they know who has poignantly provided unpaid caregiving assistance to a friend or loved one. An objective panel of experts will judge all nominations and award cash prizes based on: 1) the magnitude of care and support provided, 2) personal and external obstacles overcome to provide the care, and 3) the impact their care ultimately had on the individual.

Nominations will be accepted through July 30 online at www.homewatchcaregivers.com/grand-rapids or by submitting a nomination form to the Homewatch office in Grand Rapids. In addition to the $500 Kent County award, the local winner will be a finalist for the national award, a $5,000 national grand prize. The winner will also receive a scholarship to Homewatch CareGivers University.

Local winners of the Family CareGiver of the Year award will be announced in September and the national winner in October.

"We know firsthand that caring for a family member is a huge responsibility, often with large burdens," said Margaret Dugan R.N., of the Homewatch CareGivers office in Kent county. "We recognize that our nation's family caregivers are often unappreciated and are truly deserving of any and all support they might get. This award allows Homewatch to give back to family caregivers who have given so much-and given up so much-to support their loved ones."

The 2009 Family Caregiver of the Year award winner, Laura Dover of Charlotte, N.C., has cared for her daughter Ashley full time since 2001, when Ashley suffered a severe brain injury from a tragic car accident. The Dover's story, while heartbreaking, is inspirational for others facing similar struggles. "You learn what is important in life," said Dover, after receiving the 2009 award. "What is important is family. My family has become very close due to Ashley's situation. I have also learned to be a more patient and spiritual person through this experience. The award meant the world to me."

The winner of the local prize and national prize will be chosen by a select panel of objective caregiving industry experts. In 2009, this selection panel included representatives from AARP, the Alzheimer's Association, American Association of Long Term Care Insurance, and Genworth Financial.

To nominate a familhy caregiver, please call the Homewatch CareGivers in Grand Rapids at (616) 975-1980 for an official nomination form. For more information on the Family Cargiver of the Year program and the on-line nomination form, visit www.homewatchcaregivers.com/grand-rapids

About Homewatch International
Founded in 1980 and located in Denver, Homewatch is an experienced international provider of full-service home care for people of all ages. Home care services are personalized for each client, and customized care plans are administered through an international network of 111 franchise owners with 181 territories.

Current Understanding of the Cell Biology of ALS and Related Therapeutic Approaches.

Mary Free Bed
2nd Floor Conference Room
Grand Rapids, MI
June 24, 2010
6:30pm-8:00pm

Please contact Denise George, Patient Services Coordinator with any questions. 616-915-4979. Everyone is welcome to attend this free conference!!!

Presented By:
Merritt K. Taylor Ph.D.  Assistant Professor Grand Valley State University | Biomedical Sciences_Cell & Molecular Biology |


The discussion will include:

* What insights do scientists have about how ALS occurs?
Scientists have been attempting to understand what mechanisms have been disrupted in ALS and recent findings will be reviewed.

* What kinds of related therapies are being tested or considered to prevent or stop the disease?
Scientists and clinicians have been using insights from cell biology to develop therapeutic approaches towards ALS and the current status of some of these approaches will be discussed.

Guest Blogger: From a rider to her family

What an event this past weekend. The 2010 Gears & Beers was a success. Over 120 riders and over $40,000 raised for our cause. Please read the following email we received from Sarah Crawford, one of our riders from this year. Thanks Sarah for agreeing to let us post this.

To the wonderful group that pulled this day off:
This was an email I sent to my family and friends, but thought I might also send it your way. Thank you for your relentless work towards finding a cure.
Sarah C.


Yesterday was an amazing day full of many triumphs and tribulations. I want to again thank you all for your words of encouragement, donations, and prayers. In regards to the one hundred miles, I am disappointed to report that I did not finish. I was only able to complete 75 miles of the race. I plan to finish my goal tomorrow and finish the 100 miles I set out to do initially. What I did do however, I am tremendously proud of. It was the longest ride I have ever completed and even when I was tired and sore, I kept going. This was truly possible because I had such a wonderful support group and riding team. Thanks Katie and Greg!

Race Day Run-down:

At 8:00 we were taking pictures and discussing our routes (25 mile, 75 mile, and 100 mile), and the hills we would encounter. We kissed our families and friends and bid them farewell at 8:30. Phil was there to send us off and wish us luck.

Miles 1-11. Smooth sailing with the exception of one MONSTER hill on country club road. I was not sure that one would ever end. These miles allowed several groups to pass by us, one of which we would meet up with several times along the way. We did not know their names but they (like many) got lost more than once. We loved this group because they had a radio attached to one riders bike that played oldies as long as he was pedaling. "sugar, dada da da, OHHHH honey honey, you are my candy girl...". This was one of the songs that we heard. If you don't consider that an "oldie," I apologize and know that I love you (: The best part of these first 11 miles was when we saw Phil at the first rest stop. All three of us (Katie, Greg, and I) got a big boost from seeing him, one that would carry us through many hills and miles.

1st Rest Area thoughts - Dexter, MI "ALRIGHT... time for a snack. I am totally finishing this race. I feel AWESOME! My butt is feeling good. WOW! It is humid, better drink a lot of water. Good thing I have this camel pack from my mom to keep my hydrated. Thanks mom! Speaking of staying hydrated, I have to pee. What do you mean the bathroom is another mile down this path? I guess I don't have to go that bad.

Mile 11-29.4 This part of the route seemed especially hilly. My legs started getting really tired around mile 15. I kept pedaling and tried not to complain. I ran out of water by mile 20 but kept going. I was working really hard to keep up with my group. This was a feeling I wasn't used to. I was not able to get up hills very easily and started to lag behind Katie and Greg. I felt really bad that I was slowing them down and had some moments when I wasn't sure I would be able to finish. I was very surprised that I was having these feelings so early in the race and began to get discouraged. I decided to keep going and just worry about one hill/stroke at a time. I told Katie and Greg to not wait for me. They both said nope and that we were sticking together. Then they told me to get in front. It was about five minutes later when Katie said to me... "Sarah your seat looks low" When she said that I stopped worrying about not finishing and started to listen to my body. Katie was right! DUH! My legs are tired! Why are they tired? Because your seat is too low! My knees were very bent even at the bottom of my stride and were aching a little.The difference was immediate! I raised my seat approximately six inches, but this was a mistake that would make the rest of the ride somewhat more difficult. I had expended a lot of unnecessary energy.

2nd Rest Area thoughts - Unadilla, " I REALLY have to use the bathroom! So glad I can fill up my camel pack again. My legs feel better but they're still tired. It feels REALLY good to get off the bike. This should be a short stop, we need to get back on the road to make it to the 3rd rest stop before 1:00." This was the cut off time for a supported 100 mile racer. On a side note, people that had passed us earlier were just showing up as we were getting back on the road. Like MANY other riders, Kerry (Phil's wife) had taken a 10 mile "detour" because one of the roads was marked wrong. We were lucky enough to notice that the sign and our directions did not match. A car stopped (apparently we looked lost) and gave us directions. Second side note... I had my first GOO PACK (thanks Becky), FYI it tastes a lot like, and has the consistency of, a small tube of the Colgate gel toothpaste. It was VERY thick and VERY difficult to swallow. It was the first and last Goo pack of this trip. Final side note... spandex bike shorts are remarkably difficult to get back on when sweaty! This was increasingly difficult every time we would use the bathroom (which was like every ten miles, no joke).

Mile 29.4-52.6 Started out really good. I had a boost of energy and made it through about ten miles strong, but Katie and I had to go to the bathroom about 10 miles in. I had already gone through two camel packs of water. It was urgent. Katie and I decided that in the next woodsy area or grassy field we would stop. It ended up being grassy. Noooo problem. Katie and I walked back into this grassy patch and stomped down a crop circle just big enough for a butt and well... so on my way out of the grass, I looked down at my legs and I had red splotches ALL over them that were definitely not there prior to the walk back into the devil weeds. I had some sort of immediate allergic reaction to the grass (which I truthfully am allergic to virtually everything with a root system) but had never experienced anything like that. What are you gonna do? Other than looking like I had just caught the chicken pox from the waste down, I was fine. So we kept going. I had a lot of good moments where I would get in a stride going up hills and I also got good at using the "other" side of the hill to pick up speed rather than coast. However, it was after mile 45 or so everything began to get sore and tired again. I began to remember the hard seat and the truth that I was not even half way. I began to face again the thought that I might not be able to do this. Self-doubt was the most lingering problem during this stretch. I thought about Phil and about my uncle and I wanted to keep going for them, but there were moments when things began to hurt and I just wasn't sure that I would be able to do it. "I was only half way after all and things could only get more sore from here." I shed a couple of tears somewhere in this stretch. I felt like I was letting people down and like I was letting myself down. I again ran out of water with about 7 miles to go.

3rd Rest Area thoughts - Sibley Rd. Stockbridge, " GET ME OFF THIS BIKE!!!" This was really the only thing I was thinking at this moment. Well that and "WHERE IS THE BATHROOM?!" until I found out that we had missed the 1:00 time by 15 minutes. We had to decide whether or not to do the last 50 miles of the ride "unsupported" meaning no more rest stops until the finish 50 miles from now, or the last 25 miles "supported" meaning skip miles 52.6-72.5 that is a side loop from the spot where we were standing that brought us back to the same rest stop and just keep going to food and friends. To go right or to go left? Sometimes it is hard to know which is the right way. Yet here we were, forced to choose. As we shoved oranges and luna bars in our faces, we slowed down a bit when we realized that it might not be the best decision to do the extra loop "unsupported." We were thankful for the rest stop and decided to continue.

Mile 72.5 to Finish - By now I had figured out that it ALWAYS feels good to get off the bike and after just a few minutes of walking around, getting back on felt okay. Those rest stops were completely necessary to recuperate. I got a boost of energy right away from eating and from drinking more water and gatorade. The three of us were sad at the rest stop when we were faced with this decision to make. Limbo is never a good feeling. "wheresoever you go, go with all your heart." Upon reaching this conclusion, I felt lighter. I decided that I had already accomplished what I had set out to do which was to race and to raise money for an extremely worthy cause. I had let go of my fear of not finishing because I WAS going to finish even though I would not complete the amount of miles I had initially hoped for. I was on my way home so to speak. It was the final stretch. The race was certainly NOT over, but we were on the "other side." I felt new pain this last stretch. As I am sitting here tonight typing, I have an ice pack on my right knee. Nothing is sore except my knees and truthfully that was an intense pain for the duration of this last stretch. My sister is convinced that my knees were aggravated from my seat being too low early on. All I knew was that it hurt going up hills and over bumps (which there were plenty of those too). But even now as I have this ache, I am smiling because I know that I helped. No matter how small my part was, it was in the right direction and my heart was in it one hundred percent. It does hurt going up hills, bumps truly suck, but we DO learn from them and I KNOW that I am a stronger person for having completed this journey. Getting lost... well that is all part of the journey too I guess.

As bikers entered the park, there was no finish line. Just people standing around cheering and then there was Phil surrounded by those that loved him. There could be no greater symbolism of the day than this. In truth, how could there be finish line? Our work is not done. My part, not complete. I forgot about my pain when I saw my family. I forgot about all of the hills and bumps that made me weak just a few miles prior and I got teary eyed. I, like the 24 other people riding from the Hutchins Team, would do this a thousand times for the chance that it might mean finding a cure for this disease. I am proud to have been a part of this day and of this cause.

Thank you for being with me on this journey both in body and/or in spirit.

Sarah Crawford

P.S. I am committed to doing my part to find a cure. Hopefully next year we are riding 100 miles in celebration of a cure found.

Biomarker Research Study

Research Update from The ALS Association’s National Office
May 27, 2010


ALS Biomarkers Clinical Research Study Call for Participants
Researchers are looking for 250 people to participate in an ALS biomarker study. Anyone interested in participating should select from the list below and contact the closest medicalcenter. Participants must be at least 30 years of age, be willing to have blood and cerebrospinal fluid (CSF) drawn for the study, and participate in follow up phone calls and visits approximately every 6 months.

The ALS Association has funded several studies to support efforts to identify biomarkers: in particular, a collaboration between investigators at University of Pittsburgh, Massachusetts General Hospital and Metabolon (a diagnostic products and services company) to identify signatures for the disease. Initial studies identified potential markers. Most of these biomarkers have been discovered in the CSF. It is crucial to repeat these findings in a much larger number of samples to better evaluate the ability of the biomarkers to accurately predict ALS. We must
also determine if these biomarkers can not only be recognized in the CSF but also detected in the blood. It is anticipated that some of these biomarkers may also help predict treatment outcome.

Continued funding through The Association and more recently the National Institutes of Health (NIH) is enabling the collection of CSF and blood from 250 individuals with ALS, suspected of having ALS or another motor neuron disease, and healthy individuals. Dr. Robert Bowser from the University of Pittsburgh and Dr. Merit Cudkowicz from Massachusetts General Hospital are the leaders of this investigation. The grant application for this study won one of the prestigious NIH Challenge awards funded from the American Recovery and Reinvestment Act of 2009 (ARRA stimulus funds).
The drive to more rapidly develop effective therapies for ALS highlights the importance of early disease detection and ability to monitor disease progression.

Clinical measures of muscle and nerve function are currently used to both diagnose ALS and follow disease progression. During the past decade, tremendous advancements have occurred in the discovery of a variety of biomarkers for the diagnosis and treatment of many human diseases. Biomarkers are defined as any characteristic that can be accurately measured in the body and used as an indicator of normal or disease processes. Biomarkers may be genetic (such as SOD1 mutations for a familial form of ALS), proteins or products of metabolism.

Currently, 30 medical centers across the U.S. are participating in this study. They are collecting CSF and blood samples from people with ALS, people with neurological disorders that have similar clinical features to ALS including hereditary spastic paraparesis (HSP), primary lateral sclerosis (PLS), pure lower motor neuron (LMN) syndromes, multiple sclerosis (MS) and people with no known neurological disorders.

All samples collected will be placed in a sample repository for use in future ALS research studies. The sample repository is available for use by ALS researchers and scientists around the world to better understand the disease. The samples from this repository have been provided already to 6 different scientists searching for biomarkers in ALS. Participants in this study will help us to better understand, prevent, diagnose or treat ALS.

Featured Family: Eric Fox

VICTORY THIS WEEK!
Victory! Senate Passes the ALS Registry Act, the United States Senate passed the ALS Registry Act!! Thanks to your outreach, we have just won a huge victory for people with ALS and their families across the country. We have made a difference! The bill now heads to the House, which is expected to quickly agree to the Senate version, which included technical changes made during the legislative process. We will keep you updated as the bill moves toward enactment into law. Also, It's Official!!!VA to Grant Benefits to All Veterans with ALS
We did it! Tomorrow, September 23, the Veterans Administration will publish regulations officially establishing ALS as a service connected disease! Effective immediately, all veterans with ALS will now have access to the highest level of VA benefits without having to prove that their disease was caused by service in the military. This is a tremendous victory for all veterans and is the culmination of years of work by The Association, our VA Issue Team and veterans across the country. It is clear that our outreach - testifying before Congress, partnering with the VA, advancing research to identify the connections between ALS and military service and educating the public about this issue - have paid off. The Association has championed legislation (H.R. 5454) that would have established ALS as a service connected disease. However, thanks to our efforts at Advocacy Day and throughout the year, this legislation no longer is needed! ALL Veterans with ALS Eligible for Benefits This new policy means that ALL veterans with ALS will receive the benefits they need, deserve and have earned. Importantly, it is broad in scope and applies to all veterans diagnosed with ALS regardless of when or where they served and regardless of when they were diagnosed with the disease following service in the military. A summary of the regulation can be found here. The text of the regulation is available here.Tomorrow and in the coming days, The ALS Association will post additional information about the regulation, including answers to frequently asked questions, an overview of benefits available to veterans with ALS, as well as guidance veterans can use to obtain service connected veterans benefits.The ALS Association would like to thank VA Secretary James Peake, Congressman Henry Brown (R-SC) and Senator Lindsey Graham (R-SC) for their efforts to work with us and the ALS community in support of veterans across the country. We also would like to thank all veterans with ALS whose outreach to Congress has helped make this important benefit possible.Additional information will be available on our website on September 23. If you have any questions, please do not hesitate to contact the Advocacy Department at advocacy@alsa-national.org.
Congratulations to everyone!

Featured Family: Barb

When I was a little girl I would watch “The Love Boat” every Saturday night with my parents. I would fantasize and think that it would be so cool to be treated like royalty and everyone pampering me.........and now here it is years later and I am sailing on “The Love Boat.” Though it is very different than the one I anticipated, it has been quite a ride.

You see, in 2001, I was diagnosed with ALS. I was 56 yrs old and filled with hopes and dreams as a wife, a mom and a grandma. Our family was devastated by the diagnosis. I would much rather be sailing in the ocean basking in the sun, running around checking out touristy things and eating all that good food; but that was not to be. Instead my ship is my disease and my captain’s chair is my wheel chair. I could explain how we dealt with the devastating news when I was diagnosed or all the everyday feelings I have dealing with ALS, but I would much rather take this opportunity to tell you about my “Love Boat” staff. Only by the grace of God and the support of my “Love Boat” Staff have I been able to not only weather the storms of this devastating terminal disease but also to still enjoy the wonder and goodness of life.

My “Love Boat” staff is the best. It consists of my husband, children, grandchildren, family, friends and church. Not every day is smooth sailing, we encounter rough seas and high winds, but we also see some beautiful sunrises and sunsets. My husband Cecil is my first mate and major caregiver. He has retired early to help me with my daily care. I have my own personal attendant, personal shopper, personal trainer, personal handy man, personal chef and personal companion. He is my legs, arms, teacher, encourager and supporter physically, mentally and spiritually. He is a very, very patient person. I am not. I guess God had this all planned out when we married and I am so thankful for that. I lean on him and he is always there for me. There is no one like him. I repeat, there is no one like him. My crew is our children who also play a vital role. They encourage us and are always willing to help out.....phone calls, food, housecleaning, yard work, building ramps, praying for us and their faithful visits. My entertainers are my grandchildren ages 3 - 12 who each do their part in their own small way...pushing my wheelchair, giving us hugs, making us laugh, combing my hair, reading me books and coloring pictures for me. My deckhands are our family, friends and church who offer care and support to both me and Cecil. Our family, pastor, friends and church community support us through prayer, meals prepared and visits. Everyone is so willing to help and makes us feel so loved and blessed. It is often very humbling and hard to accept all of this help but I thank God daily for placing my “Love Boat” staff in my life.

Every day I think of this verse "This is the day that the Lord has made...Let us rejoice and be glad in it." While I do not know what each day will bring, I do know who is in control each and every day. God is my Love Boat Anchor!!! He is the one who has provided my "Love Boat" staff here on earth. As my family and I struggle with everyday situations we are learning to put our trust in God. There are many days I fall short of that trust. But I am learning to "let go" of my personal pride, my fears, my life and entrust it to my heavenly Father. Indeed, He will never leave or forsake us. We are learning to lean on and depend on Him daily and "Let it go" and give it all to God.

There will be a day when my "Love Boat" will dock. I am ready for that day. I will rejoice on the day when there will be no more sorrow, no more sickness and I will meet my Savior face to face.....what a day that will be. But, for now I keep sailing along, keeping my eyes focused on the final journey, and enjoying each and every moment that I have with my "Love Boat" staff. I treasure the song,

"You raise me up, so I can stand on Mountains.
You raise me up, to walk on stormy seas.
I am strong, when I am on your shoulders.
You raise me up...to more than I can be."

Whenever I hear it I'm reminded of all my caregivers. You are the ones who God uses to raise me up. Everyday you are there for me to help me stand and walk, to keep my spirits lifted and give me strength to face the day. My God, my husband, my children, my grandchildren, my family, my friends and my church, thanks for treating me like royalty and pampering me. Thanks for being my "Love Boat" staff!!! I love you!

Barbara Harkema

Featured Family: The Noeskes

Thank you to Todd & Keri Noeske who were willing to share their story!


In February of 2003 my mother began having problems with balance and moving her legs. She could not walk down a wheelchair ramp. The doctors began doing tests. As they did more and more tests (too numerous to recount) they were painstakingly working their way toward a diagnosis. A diagnosis that can be made only by ruling out every other possible diagnosis. She was diagnosed with ALS in the spring of 2003 which was then confirmed after she spent a week at the Mayo Clinic undergoing the same tests and more in August of that year. Our family was introduced to a new world of possibilities for the future. Where we had spent the previous fall looking at 5th wheel campers and talking about retirement plans with my parents, now we were trying to figure out where to put a wheelchair ramp and how to get in and out of the brand new Ford F-150 they had just bought to pull that 5th wheel in a few years. Decisions for the future became a frequent topic of conversations. Decisions like never being placed on a ventilator or not performing CPR if a life threatening emergency happened. My wife and I also had to make some decisions, what kind of impact could we have on the lives of my parents over the next few years. My wife had just started nursing school, we had been married for a year and a half and my son was turning 5 years old, starting school himself. We chose to do whatever it took to be a part of their lives as often as possible and support them with any decisions that had to be made. We also made a very important decision that has shaped the rest of our lives as we learned the life expectancy for someone with ALS is 2-5 years, time for more children so they can have some time with their Nana. We did not have our other children because my mom was sick, we had them so she could be as much a part of their lives as possible. We hoped and prayed that time would be long and they would have memories of her but we also knew that it might be short.

We never found the magic wand that made the experience easier, it's not there. We struggled to respect the wishes of my mom and that was to remain at home. My dad continued to work full time. After a hospitalization for blood clots in the lungs that lasted from before Thanksgiving until the New Year, my mom was not the same. She could no longer pull herself to a standing position and walk to the bathroom. My dad would come home on breaks and at lunch to help her to the bathroom. We hired a caregiver for over a year to help alleviate that strain during the day. Where one strain was alleviated, another was born. A caregiver was a blessing, paying her was a curse. Of course we did not have handicapped accessible anything in the home, so remodeling a porch into a bathroom was the next step. Then when she could no longer sleep in her bed, a hospital bed was moved into the living room. My dad slept on a bed pushed right up to the side of that bed and they always made sure to share the covers. A ramp into the yard made going outside easy during those beautiful summer months. We were lucky to have assistance from the ALS Association who seemed to know so much more about ALS than we did...They gave us a mechanical lift, helped with appropriate wheelchairs and so much more support. We still needed to care for my mom at home though, that is where she wanted to stay.

Over the first year of Josh's life, my mom continued to live with the disease and we spent more time than I can remember on that route from Kalamazoo to Jenison, Josh probably could have driven it. As she continued to fight and my wife moved through her second year of nursing school, we decided that it was time for that third child. We wanted to give her that dark-haired granddaughter she had always wanted. We wanted her to be able to hold another grandbaby and have pictures of her with that one too if possible. We also wanted to be able to share her name with that child. She would not make it to that third grandchild's birth but at least she was able to laugh with us that God had it in for my wife and it would be another boy coming along. She named that angel before he was born and his memory of his Nana is that she named him and their initials are the same.

As the summer of 2005 approached, my mom was no longer able to talk with us, but it was amazing how she could still tell us exactly what she needed with her eyes or her lips. We would spend 30-40 minutes at night positioning her hands, her legs, her neck...everything. There were pillows specifically for her right arm and ones specifically for her left. There were blankets for behind her head and a hand towel for just a little extra height behind her neck. She went to bed after 9pm on Tuesdays but had to be in bed and comfortable by 8pm on Wednesdays because we could not miss American Idol. Our family has a special place in our hearts for Carrie Underwood from that year, we have never been able to watch it since then.

My mom passed away from ALS at home with my dad at her side on June 7th, 2005. My son had his first birthday 3 days earlier. Could we have done things better or different during that time? Maybe, but we had no idea what we were supposed to do, we just did what we could do. Do we wish everyday that my mom was still here to enjoy these wonderful children and be their Nana? Absolutely. As much as my wife and I have tried to figure out a way to change the past, we cannot. So, we accept our reality of having lost a very special and strong woman to a disease way too early in life. Now we hope to help others affected by ALS by promoting awareness of the disease and pushing for legislation to allow the extent of research necessary not only to cure this disease but to understand it. When people hear the name ALS, we want them to have hope for the future by being able to offer them a cure. Right now ALS can be pretty hopeless for people. I still cringe when I hear of more people affected because I know the suffering, fear and hopelessness. I also know that with a continued rise in awareness and a push for support that we can bring hope to so many, it has happened with other diseases thought impossible and it will happen with ALS.

We had been through a tremendous loss and even two and a half years to prepare for it is not enough. The most important part of surviving the loss of my mom to ALS is the strength of my family throughout. Family members have to remain together and strong, they need one another during that time. The burden of caring for someone with ALS is too great for any one person, allow family members and friends in to help. Family members and friends, never hesitate to insist on helping and taking away some of the responsibility of the care. My dad would never have stopped caring for my mom, but by insisting on being there the rest of the family was able to spend time with that very special woman as often as possible.

Augmentative Communication Technology Seminar in Royal Oak

Please join us on Thursday May 20th at the Royal Oak Public Library at 2222 E. Eleven Mile Road, Royal Oak 48067, for an Augmentative Communication Technology Seminar, featuring Kelly Petri of Dynavox and Artie Knack, Speech and Language Pathologist for Henry Ford. The session will begin at 6:30pm and there will be time for questions afterwards. Please RSVP to Kristen at 248-680-6540 if you are able to join us.

PLEASE JOIN US BY ATTENDING OUR EDUCATIONAL CONFERENCE
May 19, 2010
6:30PM – 8:00PM
MARY FREE BED REHABILITATION HOSPITAL
Please RSVP to Denise George, RN Patient Services Coordinator if you are able to join us. There is no cost and everyone is welcome.
616-459-1900
denise@alsa-michigan.org

Augmentative Communication Technology
Presented by: DynaVox
Joel Allchin, M.A. CCC-SLP Sales Consultant – Northern Michigan
Please join us for this free presentation presented by Joel Allchin from DynaVox. If you or a loved one has been diagnosed with ALS, then you know how difficult it can be to stay engaged with the world around you when your speech and communication becomes impaired. Joel will be discussing and presenting all of the different communication assistive devices that are available and allow better communication for people with ALS.

Featured Family: Donna & Lyle

My husband Lyle Mund was diagnosed with ALS in February, 1992. It has been many years of watching a wonderful man struggle with doing what we deem to be easy and ordinary. For him the work that would take us 10 minutes can take an ALS patient an hour to do.

Lyle has endured alot over the past years. He can still do many things that a "normal" person can do. It just takes him a bit longer to achieve what he needs to do. I, as his spouse, do not try to interfere when he is doing things even though I know that he is struggling. I don't think it does him any good to treat him as if he were dying. I sometimes forget that he has this mean disease. I just treat his as I would treat any other person. He is still able to drive which is fantastic. The problems that we run into are really embarrassing for him at times. He has gone to gas stations and pumped gas and when he is done paying for it, people that are there call the police thinking that he is a drunk and that he has had one too many and should not be behind the wheen of a vehicle. He has been pulled over so many times I can't even count. He sometimes jerks the wheel when he has a muscle spasm which leads the police to pull him over thinking that indeed he is drunk driving. They ask him to step out of the car and to do a field sobriety test or breathalizer test. Lyle informs that he is not able to do the field sobriety test or the breathalizer due to his ALS. But, he will always offer to go to the police station and take a blood test that will prove that he is not drinking. He does not even drink alcohol in the first place. We are so used to it that we have the papers that legally prove he is able to drive on the roads. Lyle has to go to the secretary of state every 2 years to get a drivers road exam. He passes them every time and carries papers that show he is a responsible driver.

Lyle would do anything if someone would only give him the chance to work. Most employers are worried about the liability. He is willing to sign a waiver stating that he will not sue if he gets hurt. We think they should have something available for the handicapped in the area to do for work. Something structured around handicapped needs. He contacted Michigan Works and was invited to come to a workshop that would help him to find a job. They told him of the success rates that they have. When he got there, they tried to help him build a resume. That is all they had to offer. It is very hard to build a resume for a person who has not worked for 20 years. He only wants someone to look past his disability and to see his ability.

We once went to the Department of Human Services to try to get food stamps. We were denied. They had the nerve to tell Lyle to divorce me and then he could get all the help that he needed. We consider this an insult. We now go to food pantries for food. At least they don't tell us to get a divorce. We do not believe in divorce and think it ludicrous for someone to suggest it in order for us to get a little help. We did not even get a raise on his social security this year. He only makes 632.00 per month on social security. As you can see, we are not rich by any means. Also, that 250.00 that the government gave to us last year as his incentive was deducted from our income taxes. We got the double whammy. Thank you for this. There are some months when Lyle has needs that our finances can not cover and then we have to make the choice of paying the utilities or getting what he needs. I can tell you that his needs come first. I have had to juggle things for many years and will continue to do so, but it would be nice to have the government stand behind the people who are the forgotten ones who suffer from terminal illnesses and their families who choose to stand by their side until the very end. I am one of the people who will be here no matter what and consider it a priviledge to take care of someone who is so special and dear to me.

In closing, I am praying that you will read this letter from me knowing that we are your constituents and we also have a voice. We are voters and will let our voices be heard. I want to know that my senators and congressmen care about what is going on in my home and in the homes of other people who suffer these terrible illnesses that can only have one tragic ending. The loss of a person due to not being able to find a cure. I hope that you will consider finding funding for research. We could use that. That is the only way that we can conquer this disease. I will continue the fight for the rights of people with any sort of handicap and to remind all that they are citizens of this great country just like you and I are.

Featured Family: Regis

Regis is a 26 year old man currently fighting ALS. He has been kind enough to share this wonderful poem that he wrote about his experience.



What am I truely feeling?
the lose of the muscles
from my neck down to my toes
my grip weaking day by day
as my dexterity
slowly starts to slip away
the strugglin to breath
when even the smallest odors wanders by
the voice that now fights
just to be heard or understood
my mammoth legs
that once lifted the back end of a car
have now been redused
to barely bein able
to lift my own weight
using a walker or worse the wheelchair
where ever i want to go
hearing day in and day out
that someone should take my car keys
and strip my last form of independence away
the knowing i can no longer be the strong friend
at least in the physical state
but i never truly understood
what being a strong person really means
i have people look at me
and in the truest deepest most meaningful way possible
tell me im the strongest person they know
how can i be?
inside im breaking and falling deeper
deeper into myself
I feel the pain of my pride,
slowly drifting away from me
The life I am now forced to lead,
Seeing my world in a different light,
how do I ever overcome this endless night?
knowing I now have to fight just to live,
a fight in Which I can never stop swinging
hitting as hard as i can to prolong the inevitable
and when im around friends and family
it is a battle i never fear ill lose
but yet when im alone
as i sit and think to myself
before i drift off to dream
i always look down on my life
and it is in this moment
i find i am at my weakest
its when my tears truely start to fall
I can't fully bring myself to believe
that this is the life i have been delt
all the good ive done
and all the people ive help
its truely unreal to sit here and think
that a year ago i was completely untouchable
ready for anything and everything
knowing i had the world in my hands
and now i have to plan my every move
where im going
who im meeting
what im doing
will i be able to even participate in what we do
wheelchair or walker
will i even be able to get into the building
what will i sit on
the stress i go threw worrying
makes me rethink most of my life and what i do
And no one can truely understand the way I feel,
or what im dealing with
and the friends i keep losin,
I really haven't forgottin,
the love i have lost and the love thats still there,
but in all this sadness
and all the pain i am now faced with
i do have many people
that are standing firmly by my side
people that Im so lucky to have,
the people I really do love and trust,
They give me the strenght to carry on,
and bring me back when my mind is gone.
they Pull me up whenever I'm down,
and give me a place when im truely turned around.
The world has shown me where I need to stand,
and the road i must now walk down
but I now know down deep in my heart
that i can't handle everything with just my one hand.
So I thank God for all the love in my life,
And I can only pray
for the people i need,
the many people who love and treasure my friendship,
to always hold me and keep me strong
My thought's and prayers always turn to them,
for they have life just as hard as i do
to stand by and watch me fight
knowing there is little they can do
to ease my pain and my strife
No longer do I feel all alone on my sinking ship.
i feel love loveing hands
the hands that hold my heavy head up
the hands that are there with the light touch
not to help to much
but to give me ability to stare this right in the face
and makeing me see
the happiness that my world still holds
and that my life is not ending
but more starting a new beginning
another whole new chapter
for me to learn and adapt to
and slow down
to take in the beauty of the world
and make the most
of all the time that i have left.

- By Regis Kleiss, 26 years old. Has had ALS for 2 years.

ALSA Advocacy Day in Washington DC

We just returned from an exciting three days in Washington DC for ALS Advocacy. Advocates from across the country met with members of congress and told their ALS story and urged them to join us as champions against Lou Gehrig’s Disease.
The first priority included appropriating $10 million to continue the National ALS Registry at the Centers for Disease Control and Prevention.
The Administration and Congress made the establishment of a national ALS patient registry a top priority through the enactment of the ALS Registry Act in 2008 and by appropriating funding to develop and implement the registry, including $6 million in FY 2010. These actions have enabled the CDC/ATSDR to launch the first phase of the registry, including creating a national ALS registry website that is expected to enroll patients with ALS beginning in 2010. When fully operational the registry will identify, for the first time, the number of cases of ALS in the U.S. and collect data that is urgently needed to help find the causes of the disease and how it can be treated, prevented and, ultimately, cured.
However, increased funding is necessary in FY 201 1 to fully implement the registry, allow people with ALS across the country to self enroll in the registry and enable the CDC to coordinate with other federal agencies to identify ALS cases in all 50 states through existing databases. Moreover, funding will facilitate the implementation of strategies that ensure the registry captures ALS cases in rural and urban underserved areas. These steps are vital elements of implementing the ALS Registry Act and fulfilling the promise of the registry to advance public health initiatives, epidemiologic studies, and research into biomarkers, risk factors, and clinical studies that identify new treatments for the disease.
The second priority was to appropriate $15 million to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD).

Studies supported by the DOD, Department of Veterans Affairs, Harvard University and the Institute of Medicine among others repeatedly have found that military veterans, regardless of branch or era of service, are approximately twice as likely to die from Lou Gehrig's Disease as those who have not served in the military. These findings were most recently confirmed by a September 2009 study funded by the VA and the National Institutes of Health.
In order to support our nation's military heroes in the fight against ALS, Congress and the Department of Defense established the ALS Research Program in FY 2007. Unlike many other research programs, which focus on basic science, the ALSRP is promoting translational research and is specifically designed to find new treatments for ALS, a disease for which an effective treatment currently does not exist. The ALSRP also is funding the best science as funding is provided on a competitive grant basis and projects are peer reviewed. While Congress has continued to appropriate funding for the ALSRP, including $7.5 million in FY 2010, the current funding level will only be able to support approximately 3 to 4 projects. Yet over 90 were submitted to the program in FY 2009. As a result, under the current level more than 95% of submitted projects will not receive funding. Opportunities to discover and deliver a treatment to veterans will be lost, leaving them - and all people living with the disease - with no effective treatment option. By appropriating $15 million for the ALSRP in FY2011, Congress can continue this vital program and take steps to ensure that our nation continues to fight for our veterans just as they fought for us.
We delivered and shared PALS and CALS stories at each meeting, this personal touch brought a human factor and urgency to our efforts. A heatfelt thanks to all who shared stories!

Featured Family: Al & Wendy

This morning we thank Wendy Brookhouse for sharing her experience of watching her father battle ALS. Thank you Wendy and Al for creating awareness by sharing your story!

Since April 2007, my dad, Al Widiger, has been battling the effects of ALS. Three years after diagnosis, he is now using Hospice care to provide support and strength. He can no longer ambulate more than a few steps, he relies on a wheelchair for mobility. He is able to talk between struggling breaths, nows read electronically using his "Kindle", and, while it takes time and effort, still enjoys a good steak every now and then.

In true fashion, my father remains positive and focused on living for the present. Recently side effects of the morphine he now takes left him bed ridden and too weak to perform many 'simple' tasks. As I fed dad dinner in bed, he paused after each bite to catch his breath and swallow. After a few minutes he stated, "great food, I gotta tell my friend's about this place".

There are times I wonder how hard it must be to live in his shoes. I take for granted so many things in my daily life. It's during simple acts like feeding him dinner that my dad took a moment to enjoy the situation, regardless of circumstance. After 35 years, I realize my dad continues to teach me how to live, regardless of how easy it may be.

Featured Family: Gerry & Joe

Today we thank Mr. Gerry Severin for sharing with us his experiences with his friend Joe Caisse as he battled ALS.

Joe Caisse from Gladwin Michigan died on march 21st 2010 of ALS. I was Joe's friend all of our lives. Born and raised next door to each other we were shared everything always doing everything together. In July of2008 Joe was told he had ALS. We were devastated but knew we were going to fight a battle together, and we did. What we did not know is we never had a chance. We realized this after about 1 year and saw what the illness was doing to his whole body.

The site of this was very hard to watch. We tried experiment drugs at John Hopkins in Baltimore MA and everything else we could think of to help. He pinned his hope on stem cell but knew this was a long shot. Maybe with the experiment of stem cell research something will change in the future. But for now nothing can help and what his family and friends had to watch for the last 6 months of Joe's life can only be described as horrible. ALS has no concern for the body it just wants to destroy it. And have no doubt it does. I am a strong person and stuck with him all the way but, what I had to watch could be in a SI FI. The breakdown of Joe's body seemed systematic, Speech was first totally gone the last 6 months, hands, feet, legs, bowels, then finally breathing. He never lost his sense of humor or awareness but just about everything else was taken from him.

This illness is terrible and should get as much attention as AIDS&CANCER or any other illness. For some reason it seems ALS needs to raise most of its research money. We could sure use a lot more help in funding. If you have to watch this take a person you have known for 59 years at the age of 59 you would do all you could to find something to help find a cure. It was by far the hardest time in my life bar nothing. We did what we had to and never gave up, but the end result was a hard agonizing death we had to watch. A man in the summer of 2008 was 6'3" 245 lbs in great shape dead at 160lbs in spring of 2010.There has to be something done to help find a cure for this illness. maybe it is time to take the gloves off the stem cell, as we already know nothing else touches this illness. Maybe time to go on a limb and see what stem cell can do. Joe always said he would try anything if it killed him oh well they would know it did not work. And then could try something else he was sure anyone with ALS would go the same route to find a cure or dye trying.

After all as Joe said I have nothing to lose except a life I am losing anyway and it is no fun at all. Joe said we need to quit talking about trials and give them a try NOW for ALS. After what can happen you die trying.

Thank you Joe's life time friend Gerry Severin.

Featured Family: Mary Kay

For the month of May, ALS Awareness Month, we will be featuring individuals and families whose lives have been touched by ALS on our blog, facebook and website. We thank them for their willingness to share their stories to create awareness.

My name is Mary Kay and I am a 74 year old ALS patient living in northern Michigan.

Five years ago something strange happened. It seemed as though all my friends were going deaf at the same time. No matter what I said people would ask me to repeat, sometimes more than once. I didn’t realize my speech was so slurred people could not understand what I was saying. Not long after that I noticed that my face was beginning to droop. I didn’t make a connection between the two conditions. Looking at my face I thought I had suffered a little stroke. Since I seemed in good health I didn’t give it a second thought. Next I started drooling. Again I didn’t pay any attention, thinking it was a sign of old age. It would be close to a year later before I was to learn the real cause of my symptoms. I was still not a believer, but a trip to Mayo convinced me that I did have ALS. My ALS is bulbar which makes it impossible for me to speak or swallow.

The long trip home from Mayo gave me many hours to ponder my predicament. I thought of my friend who had died of ALS twenty some years ago. He was totally paralyzed and unable to speak, lying in bed in a nursing home. That thought struck fear in my heart, and also made me realize that I had a limited time in which to finish anything important that I had not yet accomplished.

I made some decisions and wrote my final list before I reached home. I figured it was my life, my disease, and I could make my own rules. I would not dwell on ALS, nor would I talk about it constantly. If people asked me how I was doing I would say it was a good or bad day. Nothing more. I would resign from the organizations I had been involved with and spend what time I had left with my family and friends. I would get my Trust in order, finish the book I was writing, and have an elevator installed in our home. I started praying that God would keep me calm, positive and productive. I soon changed that prayer asking to be calm, positive and patient. My disease affected many people in addition to myself. Learning how to be patient with them is not always easy.

Along the way I learned some important, and often disappointing lessons. My biggest disappointment was how little knowledge the medical community had about ALS. That set me off on a mission to educate as many people as possible. I learned that I had to be pro-active and creative. After all, this was my only body we were talking about and it was very important to educate myself, not just about the many unpleasant symptoms, but also about what equipment was available and what kinds of help was available in our part of Michigan. I built myself a network of helping people including Denise George my ALS Michigan Patient Services Coordinator, and a file of equipment information. I was ready. When it became too difficult for me to swallow I knew I needed to be fed by tube. My family and friends put together a website where they could sign up to come help feed me. I talked with my pharmacist about which pills could be ground up to go in my PEG Tube. When I reached the point that I was regurgitating the food from the tube which caused choking and aspirating I knew I needed a tracheotomy. When my muscles failed to the point that my mouth would no longer open wide enough to brush my teeth comfortably and I was unable to spit out toothpaste I started using a child size toothbrush and mouthwash. Toothpaste made way too much foam and mouthwash was easier to deal with. My educational mission for both myself and others goes on constantly.

Today my arms are beginning to weaken but my legs are strong. I am hooked up to a system twenty four hours a day that keeps my trach well humidified. Another machine is hooked up in the evening to feed me by food pump over night. I need to use a nebulizer four times a day and an airway clearance vest twice a day. Each morning and evening someone has to suction out my trach to keep my lungs clear, a job that takes about an hour and a half. It seems my life is controlled by equipment, care, and helping people.

My symptoms have gotten worse in the past five years but I try to keep my attitude the same, praying to be calm, positive and patient. Each day my life is a challenge. I like to look at it like an adventure in which I get to make my own decisions.

Back at the time I was diagnosed with ALS one of the things on my list that I wanted to accomplish was to finish the book I was writing. Having the book to work on was a real blessing for me, giving my mind a positive place to be every day so I didn’t have time to worry about my ALS. Keeping busy and positive has been a very important part of remaining in somewhat good health both physically and mentally. I did finish the book. In 433 pages Torch Lake, the History of Was-Wah-Go-Ning includes 673 maps, drawings and old photographs and a story covering 10,000 years of life in the area where I live. A major undertaking even for someone in good health. For me it was a lifetime accomplishment and a miracle.

Light a Candle and Join the Fight!

As part of ALS Awareness Month, our Chapter will be holding a virtual candlelight vigil all month on our site at www.alsa-michigan.org. You can make a donation and light a candle in honor or in memory of a life touched by ALS.

By lighting a candle you are helping raise awareness and critical funds which provide compassionate care in Michigan along with global research that will ultimately find a cure. Time is of the essence, please take action today.

TOGETHER WE WILL CREATE A WORLD WITHOUT ALS

Help spread the word and invite your family and friends to light a candle.Thank you to Governor Granholm for proclaiming that in the state of Michigan, May is ALS Awareness Month! Our chapter will be representing Michigan in Washington DC, along with all of the other states, on Tuesday, May 11th to share your stories and to help advocate on your behalf. Our presence in DC every year has had significant positive impact on the level of research funding and legislation that helps empower families with Lou Gehrig's disease. Stay connected via Facebook or Blog to see activities on Capitol Hill!

May is ALS Awareness Month!

May is Michigan’s ALS Awareness Month

At the request of our Chapter’s Public Policy Chair, Todd Noeske, Governor Granholm has declared May to be ALS Awareness Month for the state of Michigan! Please show your support and spread awareness this month by wearing a red ALS Awareness wrist band, passing along this newsletter, or joining our Chapter for some of our upcoming events. Get your band today at:

www.alsa-michigan.org

From May 9th to the 11th, members of the ALS Community, including our own Chapter staff Stacey Orsted (Executive Director) Kristen Munyan, RN & Denise George, RN (Patient Services Coordinators), will gather in Washington D.C. to advocate for ALS research funding and legislation. Advocacy Day is the largest ALS Community gathering in the United States each year.

Past Advocacy Day events have played a major role in such legislative advances as the 24-Month Medicare Waiver, increased funding for ALS research and the passing of the ALS Registry Act, which created the first nationwide ALS patient registry at the Centers for Disease Control and Prevention (CDC). These efforts also saw the approval of regulations that recognized ALS as a service related disease and established a presumptive disability ruling for ALS at the Social Security Administration. This has helped people with ALS and their families to receive timely access to disability benefits.

This year’s attendees will continue to work for increased research funds for ALS and continued development funds for the ALS Registry.

For more information on ALS Advocacy Day, check out www.alsa.org/policy/alsday.cfm.

Hello from Patient Services Troy

Thank you all for checking out our newest adventure! As a Chapter we will be updating this blog with information about what is happening with our upcoming events, new research we're made aware of and helpful information for PALS and families. We hope it helps us keep connected with the families we serve and allows you to get to know us a bit as well. We'll even be posting updates as we travel to Washington D.C. for ALS Advocacy Day in May!

My name is Kristen and I am the Patient Services Coordinator for the Chapter's Troy office. I suppose I have the honor of getting this blog started. To introduce myself, I have been with the Chapter since January and am loving being here! The past three months have allowed me to meet so many extraordinary people and families - I am so grateful! I am a registered nurse and came to ALSA from the intensive care unit at a large local hospital. I decided to pursue the opportunity with the Chapter after finding out that a dear friend of mine had been diagnosed with ALS. His struggle with this horrible disease made me want to do whatever I could to help. Working with the ALS Association has helped me to cope with my friend's illness, and has empowered me to help others dealing with a similar situation.

I hope that this blog will provide a source of information and a way to connect with myself and others on our ALSA staff. As always, please feel free to contact us with any questions or concerns. We are happy to help in anyway we can!

Thanks for reading,
Kristen

Welcome to the ALS Association, Michigan Chapter's Blog!

This is our new blog to update PALS & families about upcoming events, news in the ALS community and Chapter happenings. Check back often for updates or subscribe to get updates sent to you!