What We Accomplished Together

As the year draws to a close, we are thankful for all that you do for our chapter and the fight against ALS. It's because of the generosity of people like you that we are able to fund global research to find a treatment and a cure for ALS, support nationwide public policy efforts, and provide compassionate care and support for people living with Lou Gehrig’s Disease and their families in our community.
As we head into the New Year, let's celebrate some of the accomplishments of 2012 and look towards a brighter future filled with hope and an ever growing sense of determination.
RESEARCH

• We have 80 active grants in our portfolio and, as of January 2012, committed over $70 million to ALS research efforts.
• For the first time ever, scientists we funded identified an ALS biomarker in the blood that may lead to monitoring the progress of the disease through a simple blood test.

PUBLIC POLICY

• We secured $7.5 million for the ALS Research Program at the Department of Defense, a 17% increase over last year.
• We more than doubled the number of co-sponsors of the MODDERN Cures Act, legislation that would stimulate and expedite the development of new treatments for ALS.

CARE SERVICES

• We offer vital information and assistance through our support groups to more people every year living with ALS.
• We continue to provide consultation to assess the needs, suggest equipment and help families plan for the future.

Thank you for everything you do for those dealing with the challenges of ALS. Your support is like a ray of hope, guiding us towards a world without ALS.
Happy Holidays to you and your family!
Susan Woolner
Executive Director
The ALS Association Michigan Chapter
P.S.- There's still time to make a generous tax-deductible gift before the year is over.

Saluting Caregivers

The ALS Association Michigan Chapter again salutes those special people who serve as family caregivers during National Family Caregivers Month. The theme for this year’s campaign is “Family Caregivers Matter!” And indeed they do as they put forth much time, energy and effort to care for spouses, children, parents and other loved ones who require daily assistance in living with Lou Gehrig’s Disease.
Please help us honor these individuals this month and throughout the rest of the year. If you know someone living with ALS who has served in the military, please ask them to submit their information to the Wall of Honor. Also, remember to send a note of encouragement and thanks via an e-card to show your support to that special family caregiver.

Thank you for your support and commitment to the fight against this disease.

Saluting Veterans

The ALS Association again salutes those special people who serve as family caregivers during National Family Caregivers Month. The theme for this year’s campaign is “Family Caregivers Matter!” And indeed they do as they put forth much time, energy and effort to care for spouses, children, parents and other loved ones who require daily assistance in living with Lou Gehrig’s Disease.
On November 11, The Association also pays respect to the armed forces on Veterans Day. In honor of these men and women who have valiantly fought for our country and have also waged or are waging a tremendous battle against ALS, we are celebrating their strength and courage on the Wall of Honor. Nearly 200 service members are included on this wall, which features veterans from every era, ranging from before World War II to the conflicts in Afghanistan and Iraq.
Please help The Association honor these individuals this month and throughout the rest of the year. If you know someone living with ALS who has served in the military, please ask them to submit their information to the Wall of Honor. Also, remember to send a note of encouragement and thanks via an e-card to show your support to that special family caregiver.
Sincerely,

Two Year Milestone for National ALS Registry

It's been two years since the federal government implemented the National ALS Registry. So many of you have enrolled in the Registry and provided resarchers with the information they need to further unlock the mysteries of Lou Gehrig's Disease. But 90 minutes from now, another person will be diagnosed with ALS. That's why we can never stop spreading awareness of the National ALS Registry and encourage those fighting this disease to enroll.

The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases from throughout the entire United States. Most important, the Registry is collecting critical information about the disease that will improve care for people with ALS and help us learn what causes the disease, how it can be treated and even prevented.
The ALS Association led the fight to establish the National ALS Registry, working with Congress to enact the ALS Registry Act and secure federal funding to design, build and implement the National ALS Registry at the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR). 

If you haven't done so already, please enroll in the Registry today!

Sincerely,

Susan Woolner
Executive Director
The ALS Association Michigan Chapter

Don Barnowski

Don Barnowski, Howell, Michigan

Michigan Chapter
Maggie Barnowski refers to ALS as “a collateral damage disease.” The neurodegenerative disease, with which her spouse Don Barnowski was diagnosed in July 2010, has not only impacted the couple but also their children, friends and colleagues.  Although Don Barnowski now uses a power wheelchair, breathing assist machine and lift device, he and his wife maintain busy lives and work closely with The ALS Association Michigan Chapter to educate others about the disease.

Don and Maggie Barnowski

During May, the chapter is honoring Barnowski and Maggie, a homemaker who also serves as her husband’s caregiver, for ALS Awareness Month for the annual “ALS Across America” campaign.
“Both Don and Maggie are very upbeat people, and their positive outlook about living the best life possible with ALS inspires not only our chapter but also the Barnowskis’ family, friends and community,” said chapter Executive Director Susan Woolner.
Woolner cites Maggie Barnowski’s affinity with individuals fighting the disease.  “Maggie’s care and concern for all those affected by ALS makes her such a powerful voice in reaching out to other families living with ALS,” Woolner said.  Maggie currently attends the chapter’s monthly caregiver support group in Fenton, and she and her spouse will serve as volunteer chair people for the Walk to Defeat ALS® event in Howell on May 6.  The Walk raises funds for local patient care programs and research to find causes and treatments for Lou Gehrig’s Disease.
Both Barnowskis are also ardent supporters of Howell High School boys’ tennis team’s “Play for the Cure” tennis tournament.  Like the Walk, the event, now in its fourth year, raises funds for research and spreads ALS awareness to their community. Don Barnowski and Mark Oglesby, the team’s tennis coach, share a strong appreciation for how this event involves student athletes who proactively demonstrate how to be better citizens. This year’s tournament takes place in September 2012.
Aside from supporting these awareness activities, Barnowski, 53, former Chief Information Officer at United Way for Southeastern Michigan, also helps others with the disease by participating in research and clinical trials at the University of Michigan, Henry Ford Hospital and the Cleveland Clinic.
Maggie and the couple’s children, Nicholas, 18, and Emily, 16, will accompany Woolner and chapter volunteers to the nation’s capital to meet with national legislators at this year’s National ALS Advocacy Day and Public Policy Conference.

Meet Annette Farmer

First, Annette Farmer noticed she was tripping occasionally in 2009, as she worked her shift as a nurse in Florida. A few months later, her foot wouldn’t raise as she jogged along the beach. As a nurse, she could rationalize the muscle weakness to a herniated disc years before.
Then her voice started to change, too. Her patients picked up on that first.
“As I was working with patients, I could see, at first they thought I had an accent,” Annette said. “Then I could tell it was getting a little bit more difficult to form words. I decided,even as a nurse, something must be going on.”
Her family doctor urged her to see a neurologist. Early tests indicated ALS, but her friends urged her to go to Mayo Clinic, for a second opinion…
“Sure enough, it was confirmed,” she said. She and her ex-husband, a physician, have two adult children, and have just welcomed their first grandson. He’s not the only excitement.
On Sept. 4, 2010, just weeks after Mayo confirmed her diagnosis, Annette married anesthesiologist Richard Hackim. They celebrated their first anniversary at their Cascade Township home last week.
The couple met in a Florida hospital operating room — she was the nurse, he was the new anesthesiologist. “It was love at first sight,” Annette said, smiling broadly.
Two years ago, the new couple invested in an Ohio farm, and spend nearly every weekend at the 300-acre farm, a four-hour drive from Grand Rapids.
In the meantime, Annette has struggled to cope with her growing infirmities. The former ballerina and snow skier now wears an ankle brace and leans on a cane — for any distance, she resorts to a wheelchair. “I’m working to be independent, as far as eating and dressing. I can still drive.” But the biggest blow is in her speech.
“The hardest thing has been not being able to communicate. I’ve had lots of friends and enjoy talking to people. It seems to be the most frustrating,” Annette said. And after a year and a half of living in France, she appreciated red wine… until now.
“I can’t even take a sip without it really affecting my speech,” she said. At 52, she struggled to adjust to the vagaries of the disease.
“For the longest time — I think it was partly denial — I wouldn’t read any of the literature,” Annette said. “Every time I did, I would break down.” Gradually, though, her mind and attitude made an adjustment. She’s entered a Phase 3 clinical trial, and praises the care she has received at the ALS Clinic in Grand Rapids.
“Now, it’s just strange. All of a sudden, my mind has changed,” she said. “I’m learning to go out there and try to help other people.”

Gil's Story

I have been diagnosed with ALS. My name is Gil, I’m 54 years old and married to my beautiful wife for 25 years. We have two sons, 24, and 22 years old. Our youngest son is married and they have a daughter. I woke up yesterday morning/noon thinking what am I going to do today? Oh boy, my legs are really hurting and feel like they are lead weights. Yep, got to get up to take my meds. I sure need them right now. My wife knocks on the bedroom door, my mother is on the phone. She calls just about every day and I’m happy she does.
Six or seven years ago I remember playing basketball with my sons. I was never that good at this game but playing with/against my sons was always fun and I actually won a few games. I’m trying to play defense one day, I’m moving my body in front of him only my legs aren’t moving- I fall. As the months past I began to notice several stumbles and stiffness in my legs. After several doctors/tests, nothing definitive was found. I thought, I was just getting older(yipes!). A few months later I fell again, this time down the stairs to the basement floor, thankfully with no major injury. A couple neurologists and more tests later- I was told it was ALS. Finally I knew what I had but this doesn’t sound good. I was told it I had a slow progressing form of the disease. You ever feel good and yet scared at the same time?
At that time I felt some disbelief, fear, anxiety, anger, sadness, stress, etc. Later I thought, so these are the emotions of someone with a fatal disease and you really don’t understand until you’ve been there. I read a lot of information regarding the disease. I coped thinking, ”Hey, I’m still in pretty good shape, I’m not going to let this change me and burden my family. I have my faith, my family and my friends.”
Five years later in lifes journey, I’m using a cane and 4-wheeled walker to get around. I am laided off from my work and currently on temporary disability. I still drive but getting in and out of the car is the difficult. I fatigue easily, experience nausea, soreness/cramping in my muscles, take several medications, can’t sleep well, or sleep a lot. I have realized the change in my health and the probable decline I face which will or could become a burden to my family. Some days, I’m tired of feeling bad. Yes, there have been changes. Thankfully I was wrong about my thinking!
The Effect of Changes
I have ALS.
• What I did not realize is my wife has ALS. No, she doesn’t have the disease but she has me. If I’m struggling with my health she feels even more helpless. She is with me everyday and needs support as much as I do. We’re both committed to learning to adjust together. I have learned to appreciate all she has always done, even more. Really!
• My family and friends know this and want to help. I would refuse help still trying to do what I felt able. My mistake! I need their help and they need me to let them. To have friends or family visit, call or send cards is so encouraging! At first I thought it was “nice”(and it is). That said I don’t know of too many people who don’t have “busy” lives and yet, many have taken time to do these and other things for me. I am so thankful for them!
• Where would I be without all the healthcare professionals (at U of M) who are there to help as only they can? They have become an important part of my life and I am thankful for them. The ALS Association. What a wonderful resource. The Michigan Chapter in Troy has been a great support for my wife and I. Meeting and sharing with people who are going thru similar experiences is encouraging for all.
• The Lord knows this. God has been and is my(and my wife) strength! The Lords’ Church(the people) have shown me how to encourage and bless others by their wonderful example. I believe He has given me an opportunity to bless others. I have come to appreciate the simple experiences of my life. I never thought I took for granted any one I hold dear. Wrong (again)! I have come to a greater appreciation of all my family, friends, and others who face illness or injury. Instead of drowning in sorrow for myself, I remember my family and friends have their own daily struggles too.
.
I have a 3 year old granddaughter, Adreanna. She knows I’m not able to do what I have in the past- chase her in the yard, carry her when she is tired, and take long walks. Yet, she still enjoys the things we can do together like read books, push her on a swing at the park, play games on the floor. If I get up without my cane, she runs to get it for me. She offers to do more than she is physically able yet understands she has limitations too. Her focus is on what I can do, not papa is sick. She does this with a wonderful smile and attitude. She is a wonderful example for me. She is my Joy!
Admittedly, I do not understand all the difficulties more typical ALS patients and caregivers courageously face each day. I’m simply saying I feel able to relate a little better with the emotions of any person who is struggling with an incurable fatal disease. I’m still learning from meeting others with severe illness. I have sometimes thought of how close to death I have often been just driving a motor vehicle. God has given me time to bless and encourage others in ways I am able, by listening, sharing, and/or just being there.
In closing, I recently “dug up” a wedding anniversary card I received from my wife a couple years ago. The cover read:
“Love is not counting the years, love is making the years count”
I tried using the word “life” in place of the word “love”. They both sound good to me!