May 2010
The ALS Association, Michigan Chapter
Patient Services News Special points of interest: ALS Advocacy Day in Washington! Augmentative Communication Technology Seminar in Royal Oak! Meet the Kleiss Family A Letter from Todd Noeske, Public Policy Chair
The ALS Community is Headed to Washington
Volume 1, Issue 2
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 Ad-
ministration. 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.
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:
Inside this issue:
Chapter Services: How can we help you?
2
Tips for making dressing easier
2
Items of Interest
3
A Letter from Todd Noeske
4-5
Seminar Updates
6
Calendar
7
Kleiss Family
8-9
www.alsa-michigan.org
Happy Mother’s Day! The ALS Association, Michigan Chapter would like to wish all of the Mothers in our community a very Happy Mother’s Day. We hope the day is filled with love and family for you! In this issue, to honor this special day, we have been fortunate enough to have two featured family articles,
both related to the incredible women we call ―mothers‖. Todd Noeske, Public Policy Chair for the ALS Association who lost his mother to ALS, was kind enough to share his family’s touching story. We were also lucky enough to have Mary Kleiss, the dedicated caregiver and mother
of 26 year old Regis Kleiss, who is battling ALS, share her experiences and reflections on caregiving with us. We are so thankful for their open and honest words and hope they will touch you as well. Happy Mother’s Day to all of the mothers in our ALS Community! We are thankful for you!
Patient Services News Volume 1, Issue 2
Page 2
Chapter Services: What Can We Do For You? The ALS Association, Michigan Chapter is here to serve patients and families with ALS and to help make their journey of living with ALS easier. The Chapter has two Patient Services Coordinators on staff (Denise & Kristen) who are available to help provide information, referrals, support and hope to families affected by this disease. We encourage you to contact Denise or Kristen if you feel that you would benefit from these services or would like more information. We are more than happy to help!
“The ALS Association, Michigan Chapter is here to serve patients and families with ALS and to help make their journey of living with ALS easier.”
Information and Referrals: Your Patient Services Coordinator is available Monday through Friday to answer your questions and provide information and referrals to appropriate agencies. Equipment Loan Closet: Durable medical equipment available for pick-up or delivery, free of charge. Support Groups: Monthly meetings held throughout the state, including two call in support group sessions. See our website at www.alsamichigan.org for more details. Ruthanne’s Angels: Volunteer Program: Linking volunteers to patients and families in their area. From meal preparation to yard work, the list is endless. The ALS Care Connection Program: Is a network (circle) of caring people organized to help those living with ALS and their caregivers. Educational Conferences: Featuring speakers on various aspects of ALS. Held every other month throughout the state. Open to all. No cost.
that trains Michigan hospice organization in the care of ALS patients. Lending Library: Books, videos, CDs and DVDs about ALS available for loan free of charge. In addition to these services, our Patient Services Staff is available to meet with you and your family either in our offices or at your home should you like. Our staff is also present at the ALS Clinics throughout the state. Denise visits the Mary Free Bed Clinic in Grand Rapids and Kristen visits the Henry Ford Clinic in Detroit and the University of Michigan Clinic in Ann Arbor. They will be happy to meet with you during your appointment as well.
Let us know how we can assist you. We are more than happy to help!
We are happy to be able to provide these services to our PALS and their families and welcome your suggestions for additional services as we are continuously evaluating our programs. Please contact Kristen or Denise with suggestions or ideas.
Hospice Education: Program
Getting Dressed: Tips to Make Dressing Easier Getting dressed in the morning is an important part of the day. Getting out of pajamas and into regular clothes can be important to a person’s selfesteem, even if they are not leaving their house. With ALS, this process can become tiring and challenging. Consider these tips for making dressing easier and less tiring. - Try to find clothing with roomy arm and leg holes, that will make slipping limbs into sleeves and legs easier.
- Large buttons and Velcro clasps are easier to manipulate than small buttons or clasps. - Loss of body fat and muscle can cause people with ALS to feel cold often. Wearing several layers of light clothing can make for a more comfortable day. - Dress in a position that is comfortable for you. Some people find that dressing lying down is easiest, others find that sitting on the edge of their chair makes it easiest for them. - If you have breathing prob-
lems, consider wearing a top with a wider neck line to keep fabric away from your face. Avoid hairy fabrics like mohair that have loose filaments that can be inhaled. - To make putting shoes on easier, try replacing standard laces with elastic ones or choosing a shoe with Velcro rather than laces. Just remember: The goal should be to dress comfortably, safely and without exhausting yourself!
Page 3
Watch Facebook for Updates during Advocacy! During the month of May, we will be updating our facebook and blog daily to share the stories of families in Michigan who have been affected by ALS. Find us on facebook at: Michigan Chapter to see our updates for ALS Awareness Month!
You can find out blog at: www.alsamichiganchapter.blogspot.com
You can find out blog at www.alsamichiganchapter.blogspot.com. Please be sure to subscribe to follow our blog so you can get updates when we post new information!
Share Your Story!
Please consider sharing your story with us for ALS Advocacy Day!
PLEASE SHARE YOUR STORY: Please consider taking a moment to write a few paragraphs about how Lou Gehrig's disease has affected your life or the life of someone you love. You can send to us via facebook or email. Please include the name, city and a photo if available. These will help us convey our urgent need for a cure when in Washington DC for Advocacy Day! Help us put a face to ALS so our legislators can see the need for research and a cure!
“I get up. I walk. I fall down. Meanwhile, I keep dancing.” Rabbi Hillel
Items of Interest http://www.accesstr.com/AMAZING/index.asp - Access to Recreation, Inc. specializes in products to help people with disabilities enjoy recreational activities they felt they may no longer be able to. Some of the products include a beach wheelchair, fishing aids, crocheting aids and wheelchair accessories. This helpful website is easy to navigate and has many products available to make recreational activities more accessible.
Suggested Reading: Check out the ALS Association’s suggested reading list for some great books like the ―Easy to Swallow, Easy to Chew Cookbook‖ or ―The Caregiver Survival Series‖. Information on these helpful publications can be found at the link: http://www.alsa.org/resources/reading.cfm? CFID=5854248&CFTOKEN=5ad7e4fb09b98363-FD585863-188B-2E62-80E8C8A5A7A5FB9A
Going on a Summer Vacation? Check out ―Barrier Free Travel: A Nuts and Bolts Guide for Wheelers and Slow Walkers‖, an interesting and informative publication about accessible travel while using assistive technology like walkers and wheelchairs.
Featured Family: The Noeskes
Volume 1, Issue 2
Patient Services News
Page 4
“Our family was introduced to a new world of possibilities for the future.�
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.
Page 5
Continued... 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.
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 Now we hope to help oth- stopped caring for my ers affected by ALS by pro- mom, but by insisting on moting awareness of the being there the rest of the disease and pushing for family was able to spend legislation to allow the ex- time with that very special tent of research necessary woman as often as possinot only to cure this disble. ease but to understand it. Todd Noeske presently serves When people hear the on the Board of Directors for name ALS, we want them to have hope for the future the ALS Association, Michigan Chapter and promotes awareby being able to offer them ness of ALS as Public Policy a cure. Right now ALS can Chair. We are so thankful for be pretty hopeless for peo- his efforts and for Todd & ple. I still cringe when I Keri’s willingness to share hear of more people aftheir family’s story. fected because I know the
“When people hear the name ALS, we want them to have hope for the future by being able to offer them a cure.”
Patient Services News Volume 1, Issue 2
Page 6
Call-In Group Offers Support from a Distance As ALS progresses, it often becomes difficult to leave the house for outings like support groups. Frequently, the physical demands of traveling to a support group location can be exhausting and prevent families from participating. Getting the support you need and feeling a sense of community is important though. The ALS Association, Michigan Chapter offers an alternative to the traditional physical support group in our State-wide Call -In Support Group sessions. Led by our Patient Services Coordinators, Denise & Kristen, these sessions allow families the options of attending a support group even when travel is impossible. All are welcome at these groups and no preregistration is required. You can call in to talk with other patients and caregivers, ask questions of other families and our Patient Services Staff and share your experience. The Call-In Support Groups, offered twice a month, are a great opportunity to share your feelings in a safe environment, exchange tips and advice and discuss the latest news in the ALS community. Please consider joining us for one of the May sessions. They are held on the second Thursday of each month from 23pm and the third Tuesday from 6:30 to 7:30pm. Dial our toll free conference number at 1-877–643-6951 and enter passcode 31723015# to join. All are welcome.
Augmentative Communication Technology Seminars This Month
“For some people with ALS, augmentative communication technology can make communication
As ALS progresses, one of the problems that patients and families may encounter is the ability to communicate easily with one another. For some patients, augmentative communication technology can help make this communication easier. On May 19th & 20th, the ALS Association, Michigan Chapter will host Augmentative
Communication Technology Seminars in Grand Rapids and Royal Oak . The seminar will feature Kelly Petri & Joel Alchin from Dynavox. They will be demonstrating the latest in augmentative communication technology during her presentation. The Royal Oak presentation will also feature Artie Knack, SLP, from Henry Ford. Please consider joining us for these in-
easier”
formational sessions. There is no charge to attend and all are welcome. Please let Kristen (248-680-6540, kristen@alsa-michigan.org) know if you are able to join us. In Royal Oak on May 20th, the session will be held at the Public Library and the Grand Rapids Session, on May 19th, will meet at the Mary Free Bed Rehabilitation Hospital Second Floor Conference Room.
Educational Sessions Planned Throughout the Summer This spring the ALS Association, Michigan Chapter will kick off a series of educational seminars, offering a different session each month throughout the state. These events will be designed to address a specific topic related to life with ALS and offer information and an opportunity to meet with speakers and ask questions. These sessions will include a variety of knowledgeable speakers.
June 24th - Stem Cell Research (Pending Confirmation), Featuring Dr. Merritt K. Taylor, Assistant Professor in Biomedical Sciences and Cell and Molecular Biology at Grand Valley State University. 6:30 - 8:00pm, Mary Free Bed Rehabilitation Hospital July 15th - Hospice Services in ALS, Featuring In-House Hospice, 6:30 - 8:00pm, Brighton Lion’s Club August 4th - Respiratory Issues, Featuring Mark Orlikowski, LRT Branch Manager Airway Hospital, 6:30-8:00pm, Munson Community Health Center Meeting Room All sessions are free to attend. Please contact Denise or Kristen to RSVP.
Page 7
May 2010 Sun
Mon
Tue
Wed
Thu
Fri
Sat
1
2
3
4
5
6
7
8
9 Grand Rapids Support Group 2-4pm
10
11
12 Kalamazoo Support Group 7-8:30pm
13 Call In Support Group 2-3pm Troy Support Group BBUMC 6:30-8pm
14
15
16
17
18 State-wide Call-In Support Group 6:30-7:30pm
19 Augmentative Communication Seminar—Mary Free Bed Clinic 6:30
20 Augmentative Communication Seminar—Royal Oak Public Library 6:30
21
22
25
26
27 Gaylord Support Group 2:30-4pm Survivor’s Luncheon 11:30-1pm
28
29
Bay City Support Group 6:30-8pm
23
24 Ann Arbor and Fenton Support Groups 6:30—8pm
30
31
Don’t forget! The Troy Support Group will be meeting at it’s new location this month: The Big Beaver United Methodist Church in their Community Center Library. This move will allow our growing group more room!
Navigating the Web: What is Good Information? The Internet can be a great tool for patients and families seeking information about ALS and the changes that it brings. However, caution must be exercised when reading information on the Web. Information generated in medical forums can be based on nothing more than personal opinion, or worse, created just to sell a product. So how do you tell the good information from the bad? Look for these warning signs: - The website makes huge claims of success, such as being able to cure illnesses
or diseases.
stated.
- The testimonials provided all come from people who supposedly used the treatment and got results rather than from research study findings reported in a reputable medical journal.
- The material presented includes the author’s name and credentials.
- The treatment claims to be able to cure an illness or disease completely and quickly. - The website asks for financial or medical insurance information. Some things to look for: - The purpose of the website should be clearly
- The owner of the website/ organization associated with it should be clearly identified and include contact information. - Beware of websites trying to sell something. Hopefully these tips will help you in evaluating the information you read on line. For questions regarding research or other information you read online, please call your Patient Services Coordinator.
Make sure to carefully evaluate medical information you find online. Try websites like www.alsamichigan.org, which is the official website of the ALS Association, Michigan Chapter, for links to other
Patient Services News Volume 1, Issue 2
Page 8
Featured Caregiver: Mary Kleiss Mary Kleiss, mother of Regis Kleiss (26), cares for her son with ALS and has offered to answer some questions and share her experience.
The Kleiss Family: (from left) Dennis, Mary, Regis , Cathy and (front) Elizabeth
“We try to think of getting things done before we need them done.�
Therapy Dog Brewster accompanies Mary to visits at nursing homes.
learning about the disease and helping us get braces for Reg and helping us with any questions we have. Regis has also been doing OT at a RIM rehab facility and they have also been fantastic at helping us with anything we need for Regis.
fired. I work in the Royal Oak Schools as a substitute Para-pro working in the special ed classes. In a way care giving again! I put my job on hold this year because between taking care What has helped you and of Reg and trying to mainyour family get through the tain the house I also go see process of diagnosis and all my Mom almost every day of the changes that have and I am usually with her come since? anywhere between 2 to 4 How have you adapted to hours. I try to go at meal One thing that has helped being a caregiver for your time because she is now in us has been the tremenson? hospice and she is getting dous support from our famI have been a caregiver for to the point of not wanting ily and friends. It seems that my Mom for the last 20 to eat anymore and someeveryone wants to help us years so when Reg got sick times she will eat better for in one way or another. That we just kind of flowed into me. I also do her laundry is truly a Blessing. We have taking care of him also. It is rather than having the nursalso gotten huge support really hard sometimes when ing home do it. We have from ALS of Mi and the ALS we want to go somewhere been very Blessed to have Association. They have and we need to be home at found a fantastic nursing been there to talk to and a certain time but Reg didn't home that takes very good also have been very helpful ask for this disease and it's care of my Mom. I still feel it in getting us things we need much harder I think on him is important to go everyday for Regis' use. Another than it is on us. He is the though just to make sure thing that has helped us one really loosing his freeMom is OK and to let her also has been going dom. Thankfully also things know we are still there for through the health problems progress fairly slow so we her and haven't just abanwith my Mom. It has helped were able to kind of ease doned her. I think one other by knowing the Medicare/ into things with him and challenge is not being able Medicaid process and also adjust to care giving for to go away for vacation with helped in trying to be as him. care giving for everyone. It's prepared as possible before not that we can't go away right we need things. For it's that we can't afford to. example, getting the van and fitting it with a lift before What has been the greatest We always camped bechallenge to caregiving for cause we couldn't afford a Regis needs it rather than Regis? motel room and camping is waiting and then being so much cheaper. There is forced into decision making Actually I think for us the no way Reg can camp anyin a hurry because we need greatest challenge has more it would be way too something now. We have been the balancing act behard and with Re and I not the van that need to be fittween care giving for Reg working we really cannot ted with a lift, a boy scout and for my 93 year old afford a motel room. We've wants to do a ramp on our Mom. She has been in a just learned to adjust and house for an Eagle project nursing home now for a do day trips instead. They and we have a friend who is little over two years ever aren't as good as actually a plumber who has said he since she had a stroke in getting away but again we will help with bathroom 2007. Prior to the nursing are Blessed and at least we modifications. We try to home she had been living can get away for the day. think of getting things done here with us so we had There are many people who before we need them done. been care giving long becan't even do that so we are Dr Lewis and his staff espe- fore Reg got sick. I ended grateful for what we have cially Stacy at the Hiller up putting my job on hold and what we can do. Clinic at the DMC have this year and thankfully I been very helpful also with can do that without getting
Page 9
continued rything that is going on. What kind of advice can you offer to other caregivers who find themselves struggling? I think keeping a sense of humor is very important. I know it's hard to find humor sometimes but I feel it is important in trying to keep your balance. A good belly laugh can really change the way you are feeling. Also trying to find something you really enjoy doing. My outlet is birding and gardening. If I get stressed out it's amazing how just working in the garden for even 15 minutes can change the way I'm feeling. I love birding also and my hubby and I try to get out birding when we get the chance. The nice thing about birding is we can even do it at home in our back yard. We are a habitat thru the National Wildlife Association and I love sitting out on my deck watching the birds that come to my feeders. The gardening and birding are nice because it is a release for me and I don't even need to leave my house! If at all possible keep an open line of communication with a few really close friends. Some people sadly will not communicate with you because I think some people can't accept the disease and what it is doing to the patient and they don't know what to say to the caregiver. Thankfully we have some really close friends so we can call on them is need be. Some are friends with our son Regis and others are Denny and my friends. Our daughter Cathy has also been very helpful with eve-
I always try to keep in mind also that things could always be worse. I know that is hard to comprehend when you are faced with a horrible illness like this but for me I think about the parents who have lost their children suddenly to an accident or something like that. I am Blessed because I still have my son to talk to and care for and possible see a cure for. Nothing is done and finished until the Creator says it's done. Who knows in his lifetime maybe there will be a break through cure. In the mean time I still have him with me unlike some parents whose children are no longer with them. We have to be thankful for all the things we have in life. Any other thoughts? If you are reading this and you are not care giving for someone please try to reach out to someone who is struggling as a caregiver. Offer to give a caregiver a break for an evening. It will give the caregiver a break and it will give the patient a new person to talk to. A true win-win situation! Chances are the caregiver and the patient will really appreciate someone caring enough for them to be willing to take their time to help. My sister, husband, son and daughter are the only ones who go to see my Mom in the nursing home. Everyone needs to know they are still thought about so even visiting a nursing home is a great thing to do. I know in Mom's nursing
home there are allot of folks ho never have visitors. If you have a dog consider getting a therapy dog certification on them so they can also make visits. We have two dogs and both are certified therapy dogs. They visit my Mom now but when she passes I will continue taking the dogs in to see the folks there. They have turned into family for me and I plan on continuing visiting after my Mom passes. It brings joy into my life knowing I can bring joy into someone else's day. I find also for myself that I always take a book or my needlepoint with me to visit my Mom that way I don't feel like I'm just sitting there wasting time. When my Mom is sleeping which is most of the time I read. When she wakes up I put my book down and talk and the start reading again when she goes back to sleep. Again a win-win situation. I don't have the time to read while I am at home so going to see my Mom is also a welcome relaxing time for me. I also always take a book or something else to do when we go to Dr's appointments etc with Reg. It's great for passing the time! The biggest thing is please don't turn your backs to anyone with an illness. Even if they can't communicate like my Mom right now they need to know that you are there supporting them. Thanks so much for reading this and thanks for allowing me to share a little of our lives with you.
To relax, Mary gardens and enjoys birding in her backyard, a National Wildlife Association Habitat. (Brewster peeking thru the fence)
“I am Blessed because I still have my son to talk to and care for and possibly see a cure for. “
Regis’s Basset Hound pup, Riley, also a Therapy Dog, brings laughs to nursing home residents and to the Kleiss Family.
Fighting Lou Gehrig's Disease on Every Front.
The ALS Association, Michigan Chapter ALS Association, Michigan Chapter 678 Front Street, Suite 159 Grand Rapids, MI 48504 675 E. Big Beaver, Suite 207 Troy, MI 48083 Phone: 1-800-387-7121 (Grand Rapids) Phone: 1-866- 927-2873 (Troy) E-mail: denise@alsa-michigan.org kristen@alsa-michigan.org
www.alsa-michigan.org
Our Mission To lead the fight to cure and treat ALS through global, cutting-edge research and to empower people with Lou Gehrig’s disease and their families to live fuller lives by providing them compassionate care and support.