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My Positive Experience with Hospice Care

My Positive Experience with Hospice Care

Written by Larry Kellerman (MSA Coalition Board of Directors and Support Line volunteer)

I remember the day as if it was yesterday. My wife’s physical condition due to the neurodegenerative disease multiple system atrophy (MSA) was such she could no longer make it to the doctor’s office for a checkup and her doctor had said, “I’ll do a house call.” As several of my wife’s friends stood by the bed and visited, the wonderful doctor who had cared for her for over three years pulled up in front of the house and walked up the driveway.

At the end of her hour-long examination and the ensuing discussion, Dr. P stood up and said “I think it’s time to get hospice here to help both of you.” She left that August 4th with assuring words that we both would have much needed support soon. Three days later we had our first visit by the hospice nurse and by the end of the visit had been given a glimpse of the challenges and benefits of hospice care.

When it’s time to consider hospice care in multiple system atrophy

Hospice care comes at a time in a patient’s life when he/she is not expected to live beyond six months, either because of disease prognosis or the patient choosing to reject a lifesaving treatment. Hospice care is provided by a team and part of that team’s mission is to support the goal of the highest quality of life possible for the patient. In the end hospice care is vital when caring for a loved one who has chosen to stay at home during those last months.

Once hospice has been certified, identifying a good hospice provider is important. In our case the doctor recommended a provider and we stayed with them until the end. There have been individuals who have called the Multiple System Atrophy Coalition call line to discuss their hospice experience and told me they decided to change providers. The goal should remain the same no matter the hospice provider: the best quality of life (QoL) possible for the patient.

Hospice is a team effort

They bring to the team the nurse, support staff, a doctor, a social worker and specialists if necessary; you bring your own skill set and all the friends and family members who support the patient. What I found in the six months we had hospice staff at our house was a good integration between their team and my wife’s friends. In part it was because all of those involved saw what caregiving for an MSA patient did to the health of the caregiver; in part it was because everyone made a real attempt at being supportive of each other.

Hospice staff members are not perfect. You do want to be very aware of what is going on when they are at the house. There are many examples that can be provided by other caregivers, but I can share one example that illustrates potential issues surrounding hospice care.

There came a day when my wife needed to have a catheter inserted and two hospice nurses arrived to do so. As one nurse bent over to insert the catheter her long hair fell over the pubic area and needed to be brushed out of the way. It was the first catheter for my wife and within a few days she had a full blown urinary tract infection (UTI). I called the hospice doctor and told him what happened. He said that is not acceptable and the next time make sure the nurse understands that. So, guess what? A couple of weeks later the catheter needed to be changed and the same nurse arrived, again with her hair down and loose. I had to tell her to put it up, which she did and then completed her task.

I found hospice staff do listen to the caregiver and friends. To address the issue above they allowed me to sit in on a weekly staff meeting and discuss it and a couple of others that had arisen. In the short time I was there they listened and the doctor on the staff reiterated how important it is to follow best practices.

Hospice CNAs are quite important to the overall care of the patient. It is the CNA who helps the caregiver give the patient showers, clean and dress any wounds or open sores and keep the patient’s immediate environment as clean and orderly as possible. The several CNAs who rotated through our house for the six months they served us did a very good job being my “right hand person.”

More importantly, the CNA who had the most profound impact on my wife and me made a special effort to help her feel as much like a woman as possible. Early in the disease progression I had learned how to put earrings in pierced ears and brush hair, and even practiced a few times putting on fingernail polish – not so good at that! The CNA came in and immediately understood there’s more to being a woman than earrings and brushed hair. She would brush and style the hair, put on lipstick and paint her fingernails for those days when visitors would come over or when my wife had a rough night. She did her best to ensure the “best QoL” mantra was followed.

All through this time the hospice social worker and nurse made their regular visits. The nurse’s job was to check vitals and any sores or injuries the patient suffered and ensure there was the needed supply of medications. The nurse would order the meds and bring them to the house, allowing me the opportunity to stay home and be with my wife. The social worker was also a regular and her goal was to help us with our bad days and to be another caring individual with whom we could share those feelings that arise when dealing with a terminal disease known as “Parkinson’s on steroids.” We both looked forward to her visits.

As I noted above, hospice is certified when the doctor ascertains the patient has about six months to live. Sadly in our case, entry into hospice turned on the death clock and six months to the day my wife passed. That day the CNA was not scheduled so it was just a good friend and I who were there as my wife passed peacefully. I immediately called the nurse and within 15 minutes he was there to certify death. Hospice staff called the funeral home to come pick up her body and ensure all her final wishes were met. The social worker arrived to make sure I was doing okay and see if she could be of help. To the end of this six-month saga hospice served us well.

Hospice can benefit both the patient and the caregiver

Caring for a terminally ill patient is difficult no matter the disease. In the case of MSA, a relentless and devastating disease, caregiving is 24/7 during the last months of life. Support both emotionally and medically becomes so important to the health of both the patient and the caregiver. Hospice care can be an integral part of that support. I hope your experience is a good one and encourage you to share your story so that others can understand the positive role hospice care plays. With a goal of “best quality of life possible” hospice can help attain it. I hope your hospice experience meets that goal for your loved one.

Meeting A Mission One Support Line Call At A Time

Meeting A Mission One Support Line Call At A Time

Written by Larry Kellerman

I am the MSA Coalition support line volunteer for a coalition representing a very rare and devastating disease. I have found being that person who can share resources, advice, a shoulder to cry on and the voice of hope brings people back again and again to share their thoughts and questions. Every call helps me meet the mission my deceased wife and I developed during her last months suffering from multiple system atrophy (MSA), a rare and terminal neurodegenerative disease. “Help others who are on this da#ned journey” was her lament that led to me dedicating my life to be a support for MSA patients and caregivers.

One caller in particular is the reason for this story. I’ll call him Gary but that is not his real name. He first called the call line about 18 months ago and after our first conversation he asked if he could call back if he had any additional questions or just needed to talk. I told him it would be my pleasure to be there for him and put his contact information in my contacts list.

Over these last 18 months we’ve probably talked a dozen times. He’d call when the journey was getting difficult or when he’d see a change in his wife’s condition and needed to have some reassurance. Over those months we became comfortable talking to each other and a couple of times advice I shared helped make a positive difference in his wife’s treatment and condition. During that same period of time I heard in his voice a resolve grow that was not there at first, a resolve to be a positive part of the MSA journey.

Two weeks ago he called and told me how quickly his wife had taken a turn for the worse. She was now unable to hold herself up and leaned to one side, had difficulty eating and was very fatigued. We talked about what that might mean and I shared some advice heard at a recent support group meeting; “If there’s a change for the worse in an MSA patient it’s quite likely to be a urinary tract infection.” He was sure they were giving her antibiotics to prevent a UTI but would check. When the conversation ended I could hear in his voice that worried sound of “could this be the last time a symptom impacts her like this?”

He called four days later and when I took the call I could hear cheerful voices and laughter. He told me he wanted me to hear how crazy it was now that his wife was home and the children were there visiting. He even introduced me to his wife and we got to exchange a few words. Her voice was weak but I could understand everything she said. He got back on the line and said he just wanted to share that family time with me. Talk about feeling humbled as I hung up.

Early Friday evening the phone rang and Gary’s name appeared. I immediately answered and said “Hi.” He said to me “Larry, she passed away today, and we were all here when she did.” He shared some of the information about those last hours with the family and calling the hospice nurse to come out, only to have his MSA wife pass before the nurse arrived. I think at that point I was the more sentimental of the two of us, trying to hold back the tears of “S#*t, another MSA patient taken from us.”

Then he shared something that made my night, week and maybe even my year. We had talked a couple of times during that 18 months about his wife donating her brain. Just days before she passed he called a nearby research center that has a brain bank. Over a few hours they confirmed his wife’s approval of the harvest, contacted the funeral home and pathologist who would complete the harvest and made the process very smooth for Gary and his wife’s donation.

He told me he had asked them how many MSA brains they have in their bank and they said “less than twenty.”

I paused for a short time before words would come out of my mouth. “Gary” I said. “One of those brains is my wife’s. You have donated to the same brain bank that has my wife’s brain.”

One day in the life of a support line volunteer.

Written by Larry Kellerman, MSA Coalition Board of Directors & Support Line Volunteer

A Charity Footprints powered Global Virtual Walkathon is Underway to Raise Money and Awareness for Multiple System Atrophy (MSA)

A Charity Footprints powered Global Virtual Walkathon is Underway to Raise Money and Awareness for Multiple System Atrophy (MSA)

The MSA Coalition has embarked on a partnership with Charity Footprints Inc. and other MSA charities to recruit a team of 250 walkers and fundraisers for its Global MSA Walkathon. The goal of this virtual charity walk is to cover 52,000 miles and raise $250,000 between March 15, 2019 which is during MSA Awareness Month and October 3, 2019, which is World MSA Day. Team members track their steps via a wearable fitness tracker or a smartphone app while walking locally at a time and place of their choosing.

CHARLOTTE, NC – The Multiple System Atrophy (MSA) Coalition today announced that a multi-charity collaborative effort is now in progress to recruit at least 250 walkers around the world. Using an innovative Virtual Racing platform from Charity Footprints Inc., the team of walkers track their daily steps via a wearable fitness tracker or a smartphone app. In real time, participant steps are being tracked on the Global MSA Walkathon Map. The goal is to walk 52,000 miles around the world while raising $250,000 by World MSA Day, 2019. Along the way, the team will virtually visit important MSA research centers, treatment centers, and other MSA charities. The walk will begin on March 15, 2019 to commemorate MSA Awareness Month. Walkers can begin signing up for the virtual event on March 15, 2019.

“The walkathon is viewed as a critically important event for bringing MSA charities together on a global awareness initiative. As a rare disease, the best way to build awareness for the plight of those affected by it, is to activate the MSA community as a whole into a unified event,” stated Don Crouse, Vice Chairman of the MSA Coalition. “In partnership with Charity Footprints and other MSA charities we are able to create one strong voice to inform the world about Multiple System Atrophy. At the same time, we are hoping to recruit new advocates and fundraisers so that we may be able to increase our impact on improving the quality of life for those affected by MSA. Our goal is to continue building hope that someday disease altering treatments and a cure are found.”

The following MSA charities are collaborating in this Global MSA Walkathon: MSA Trust (UK), MSA-AMS (Belgium), MSA NJ (USA), Cure MSA (USA), the Rex Griswold Foundation (USA), Blandford-Rees Foundation (USA), and Move Over MSA (USA).

“AMS-MSA Belgium is looking forward to the Global MSA Walkathon virtually visiting us. The walkathon is an important awareness initiative as we continue to fight multiple system atrophy,” said Ritje Schouppe-Moons, Chief Executive of the AMS-MSA Belgium, organizer of the yearly’JiePie Award for MSA Research’ and Spokesperson for World MSA Day, observed on October 3rd. “Collectively we count miles/kms walked and attempt to circle the globe. All to symbolize our unity in the fight against MSA. We continue to be committed to working collaboratively with our MSA colleagues on important initiatives that lead to the advancement of knowledge around understanding MSA and supporting those living with MSA, their families, and care partners. We very much appreciate the collaborative team-building efforts of the MSA Coalition in this regard.”

“MSA NJ is very excited to be a part of this amazing team of MSA stakeholders. The fundraising and awareness generated for multiple system atrophy will certainly help the cause.” said Kymberli Roemer, Chairperson of MSA NJ. “The MSA Coalition has been a leader in facilitating collaboration among MSA charities. The Global MSA Walkathon is is an excellent example and we hope it becomes an annual event that truly makes a difference. We are proud to be a part of the team and hope to see New Jersey well represented among the walkers and fundraisers.”

The Global MSA Walkathon is being powered by Charity Footprints, an innovative platform designed to promote fitness and encourage charitable giving. Because MSA is so rare it is very difficult to organize in-person charity walks and other live fundraising events. We are confident that this virtual event will motivate people to become MSA advocates and fundraisers, and will provide a jolt of energy to new volunteer recruitment. A key feature of the platform is that it allows people to gift registrations to other family members, friends and colleagues – through a Pay-It-Forward integration. MSA strikes in the mid-part of life with a typical onset age of 45-65 years. As such, the MSA Global Walkathon offers an opportunity for younger generations to fundraise in honor or memory of a loved one with MSA.

“Charity Footprints is thrilled to be the official technology partner of the Global MSA Walkathon,” said Rahul Razdan, the Chief Executive Officer of Charity Footprints Inc. “It is extremely rewarding to see our platform being used by an ultra rare disease community to build awareness and collaboration on a global scale. Multiple System Atrophy Coalition is our first non-profit partner to undertake a walk around the world and we wish them nothing but success. We will be cheering loudly as they near their fitness and fundraising goals!”

A successful Global MSA Walkathon will allow the MSA Coalition to increase its funding for worldwide initiatives to better understand and treat Multiple System Atrophy. Over the past 4 years, it has awarded $1.6 million to fund 36 research grants from around the world aimed at identifying diagnostic biomarkers and potential treatments. The Coalition has been the primary sponsor of multiple International MSA Congresses, the American Autonomic Society Congress, and the European Federation of Autonomic Societies Congress, and has awarded travel grants to many young MSA investigators. The MSA Coalition is currently developing a new research program to better target its funding efforts towards meaningful progress in improving diagnosis and treatment options.

“We are extremely excited to embark on this unifying walk around the world. The MSA Coalition prides itself on our strong track record of working collaboratively with MSA charities, researchers, autonomic centers of excellence, and corporations. Since hosting the 1st Global MSA Advocacy meeting last year, we are eager to maintain momentum on joint activities for the MSA cause. Our walk will highlight our collaborations as we “virtually” visit each partner in the fight against MSA,” said Dr. Cyndi Roemer, Chair of the MSA Coalition. “Another very exciting aspect of the Global MSA Walk-a-thon is its potential appeal to multi-generational participants. One of our hopes is to see the parents, siblings, children and grandchildren of multiple system atrophy patients walking and fundraising for the MSA community. Together, we can make progress as we enhance quality of life, while building hope for those living with MSA.”

Join the Global MSA Walkathon or support it with a donation! The Global MSA Walkathon is also seeking corporate sponsors and has several sponsorship packages available.

12 Days 12 Ways

12 Days 12 Ways

12 More Days until the end of our Holiday Hope Campaign! Here are 12 Ways to Give to The Multiple System Atrophy Coalition this Holiday Season!

With the end of our Holiday Hope for MSA Campaign fast approaching, the MSA Coalition is within striking range of raising over $1 million overall in fiscal year 2018. The $1 million mark is very important to achieve as it will enable us to be officially monitored by Charity Navigator and will open up more opportunities to receive grants from other private and government organizations.

Below are 12 ways you can help the MSA Coalition achieve this major financial milestone which will allow us to better pursue our mission of improving quality of life while building hope for those living with MSA.

1. Donate on CROWDRISE! Remember All Crowdrise Donations will be MATCHED!

Go a step further and Join the Team to Create your own Crowdrise Awareness and Fundraising Page! EMAIL the link to all your friends and ask for their support. Easily track who gives to your page and followup with thanks.

2. Donate on FACEBOOK!

Go a step further and Start your own Facebook Fundraiser! Click the blue INVITE button individually for everyone in your Facebook friends list and SHARE, SHARE, SHARE!

3. Donate on the MSA Coalition’s WEBSITE! Add a tribute to a loved one, designate your gift to research, education or where the need is greatest:

4. Donate with a CHECK or MONEY ORDER! Make it payable to: MSA Coalition, 7918 Jones Branch Drive, Suite 300, McLean, VA 22102

5. Donate to the MSA Coalition PAYPAL GIVING FUND! PayPal will add 1% to your gift and there are no fees!

6. Donate via the COMBINED FEDERAL CAMPAIGN! Federal employees and retirees, please note our CFC number is 42606.

7. Donate STOCK or Donate by BANK WIRE TRANSFER! Just email our treasurer for assistance with these options. or phone 866-737-4999

8. Arrange Now to LEAVE A LEGACY! Remember the MSA Coalition in your will:

9. Donate your USED CAR!


11. Send or Post a PURPLE HEART in tribute to your loved one at the MSA Coalition Wall of Love.

12. Post a PHOTO of your loved one at the MSA Coalition Angels and Warriors Page.

10 Evaluation Criteria for Selecting a Nonprofit to Support

10 Evaluation Criteria for Selecting a Nonprofit to Support

Are you looking to evaluate which multiple system atrophy (MSA) nonprofit to support with your donation or fundraiser? Even for such a rare disease, you do have choices. Our goal with this blog post is not to instruct you to donate to the MSA Coalition. Rather, we are going to answer the 10 evaluation criteria suggested by the American Endowment Foundation. We encourage you to contact us if you have any questions. We also encourage you to ask these same questions of any other MSA nonprofits you are evaluating. By understanding each MSA charity’s mission, goals, governance, programs, and accomplishments, you can best put your MSA designated funds to work in a manner that suits your desires.

Ten Criteria for Evaluating MSA Nonprofits

1. Look at the charity’s mission and determine if this is important to the donor.

The Multiple System Atrophy Coalition is a 501(c)(3) charitable organization founded in 1989. It has a 30-year history of devotion to improving the quality of life and building hope for people affected by MSA. The MSA Coalition developed its four-pillar mission in 2011:

  • Providing patients and caregivers with trusted and compassionate emotional support.
  • Educating patients, care-partners and healthcare professionals with credible, critically important, and relevant information.
  • Funding patient-centric collaborative research aimed at alleviating symptoms, slowing disease progression, and discovering a cure.
  • Building a sense of community by connecting and unifying people affected by MSA.

2. Look at the outcomes. For instance, how many people has the organization helped, and has that increased or decreased over time? Given the size and budget, is that number reasonable?

Due to the nature of rare disease it is difficult to pinpoint how many people the MSA Coalition has helped. The MSA Coalition has more than 20,000 followers on Facebook and 10,000 e-newsletter subscribers. Additionally, more than 20,000 people visit the MSA Coalition website each month. Of great importance, the MSA Coalition hosts an annual patient and care partner conference, educating families about MSA and providing an opportunity to connect with others living with this disease. More than 230 people attended the 2019 conference in person and and over 3,000 people have watched the virtual educational videos from that conference. In fact, the MSA Coalition has been live streaming its conference since 2013 with thousands of online viewers each year. A big part of our mission is providing a trusted sense of community for those affected by MSA. We believe our programs are effectively reaching the MSA community.

Another major part of our budget is multiple system atrophy research funding. Over the past few years, the MSA Coalition has Dr, Gregor Wenning's Multiple System Atrophy Research Labpartnered with the National Institutes of Health to fund the Global MSA Registry (GLOMSAR). GLOMSAR collects data for a natural history study and enables patients to be readily available for upcoming MSA clinical trials. Additionally, the MSA Coalition Research Grant Program has funded 40 research grants to date. There are 20 published peer-reviewed articles that have arisen from our research grants so far and many have been presented at scientific conferences. While it is too early to measure, the hope is that these and future funded studies will begin to positively impact the medical outcomes of those with MSA.

3. Review the financial information. Is it transparent and recent? Are the expenses in line with the budget? Has the budget increased or decreased in recent years? If applicable, how has the organization adjusted to a decrease in government funding? Look through the current Tax Form 990 and also verify its tax-exempt status.

The MSA Coalition publishes all of its annual Tax Form 990s. We encourage all interested supporters to carefully review these documents and to contact our treasurer, Carol Langer, with any questions.

While the MSA Coalition has not been directly impacted by reductions in government funding, rare diseases including MSA cannot count on the government to sufficiently fund much-needed research. As such, grassroots fundraising is a critical component to ensuring that MSA research continues to be funded. Since 2013, the MSA Coalition has funded 40 research grants totaling more than $2 million at 29 renowned MSA research institutions around the world. Additionally, in 2019, the MSA Coalition launched a parallel research grant program focused on larger grants that foster international research collaboration targeting genetic and environmental causes of MSA, biomarkers for earlier diagnosis, and treatments.

A sustainable and increasing revenue stream will ensure that the MSA Coalition can continue to fund important research as recommended by its Scientific Advisory Board.

Verify the MSA Coalition’s tax-exempt status. Please use our Tax ID number, 74-2926378 to search.”


4. Talk or meet with the organization’s leadership if the donation is significant enough. Has there been much turnover of key staff members? How can the donation be best utilized? Who will be the primary contact person for the donor?

We encourage any donor to call and ask questions about The MSA Coalition. The all-volunteer board of the MSA Coalition has had very low turnover. We encourage donors to earmark donations “as needed,” however donors can also restrict funds to “research” or “education.” Please call the MSA Coalition at (866) 737-4999 to be connected with the right volunteer to discuss your questions.

5. Identify who is on the Board of Directors. Are there many or few board members? Are they business or community leaders? Especially if a donor is considering joining a board, she or he should meet with some board members.

The MSA Coalition Board of Directors is 13 members strong. Most board members have a strong personal tie to multiple system atrophy, having lost a loved-one to the disorder. The MSA Coalition also has an active MSA patient representative as well as a MSA caregiver representative on the Board. There are board members with medical and doctoral degrees, IT, business and financial backgrounds, educators, business executives, and journalists.

6. Evaluate the main supporters. Are there many funders or few? Have key funders been involved for some time? Does the donor know any supporters?

While the MSA Coalition receives the majority of our revenue from grass-roots fundraising within the MSA community, it does have large donors and several corporate sponsors. As an example of our large fundraising base, in 2017 over 1,800 donors participated in our year-end giving campaign on CrowdRise. The MSA Coalition has received grants from Lundbeck USA to support the past several annual MSA Coalition Patient & Family Conferences. Other grants have been received from Biohaven, Biogen and AstraZeneca. These organizations and individuals also have provided funds to support the MSA Coalition Research Grant Program: MSA Trust, Cure PSP, MSA NJ, Move Over MSA, the Rex Griswold Foundation, Patrick Costigan, and the Blandford-Rees Foundation.

7. Discuss with the leadership how the donor can be most helpful in addition to financial contributions.

The board members of the MSA Coalition will be happy to discuss your interest in volunteering your time. Please visit our Contact Us page and visit our Board of Directors page to learn more about each volunteer board member.

8. Visit the organization if possible or volunteer to really get to know the people and quality of the work.

As a virtual organization run by volunteers, the MSA Coalition does not currently have offices you can visit. However, an excellent opportunity to volunteer and meet our Board of Directors is at our annual Patient & Family Conference. This conference is the world’s largest get-together of MSA patients, their families, volunteers, other MSA charities, companies, healthcare professionals, and MSA researchers. It is an excellent place to evaluate and see first-hand the work being done.

To get a sense of our annual conference format, view our recorded MSA annual conference sessions, which were also live streamed. Of course, our board members are always just a call or email away if you want to communicate with us!

9. Determine that the organization has a very good reputation.

Our long-standing, highest-level ratings with GuideStar, and Great Nonprofits help validate our reputation as a trusted and credible MSA nonprofit. Additionally, begining in 2029, the MSA Coalition received a perfect rating from CharityNavigator, one of the most trusted charity watchdogs in the industry and is the only MSA charity to be covered by them. More importantly, our credible patient/care partner support services and regular educational programming provide those affected by MSA with an important sense of community and the tools to better advocate for their health.

The MSA Coalition’s renowned Scientific Advisory Board and MSA Research Grant Program continuously receive praise from the research community and scientific conferences for the work we are doing. At the American Autonomic Society Scientific Sessions, presenters continue to acknowledged the MSA Coalition for funding that is leading to important breakthroughs. Dr. David Robertson has praised our research grant application and review process as being as sound as that of NIH.

As a testimony to our reputation, the MSA Coalition is the only multiple system atrophy charity to have invited representatives on the Coalition of Patient Advocacy Groups (CPAG) and Rare Disease Clinical Research Network – Autonomic Disorders Consortium (RDCRN-ADC) at the NIH. This important alliance has successfully secured governmental research grants for MSA, including funding for the Global MSA Registry (GLOMSAR).

The MSA Coalition’s research funding is acknowledged in many published scientific peer-reviewed articles. We have sponsored travel grants for more than 30 young investigators who’ve presented their MSA work at prestigious scientific conferences such as the International Parkinson’s Disease and Movement Disorder Society Congress, the American Autonomic Society Congress, the International Congress on Multiple System Atrophy, and the Society for Neuroscience. Additionally, the MSA Coalition has more than 800 researchers and healthcare professionals who have opted into our research and healthcare provider database to stay abreast of opportunities to apply for research grants and young investigator travel awards.

The MSA Coalition works collaboratively with other MSA and related organizations. In 2018, we organized and hosted the 1st Global MSA Global Advocacy Meeting Hosted by MSA Coalition March 2018MSA Advocacy Meeting, bringing together MSA organization leaders from around the nation and the world and established the Global MSA Advocacy Consortium. The meeting, led by Cyndi Roemer, Chair of the MSA Coalition, featured lecturers by the National Organization for Rare Disorders (NORD) on how to build a consortium and by the Michael J. Fox Foundation on their research grant program. The following nonprofits and foundations were invited attendees: MSA Trust (UK), MSA-AMS (Belgium), MSA NJ, Defeat MSA, the MSA Shoe, Cure MSA, the Rex Griswold Foundation, Blandford-Rees Foundation, Move Over MSA, the Cleveland Clinic Lou Ruvo Center for Brain Health, CurePSP, the Michael J. Fox Foundation, and NORD.

The MSA Coalition also encourages all charities, foundations, and large individual donors to partner with the MSA Coalition’s Research Grant Program. This partnership helps ensure synergy with limited research monies and access to expert scored research grant applications. The following groups and individuals have contributed substantially to past MSA Coalition grant programs: MSA Trust, Cure PSP, MSA NJ, Move Over MSA, the Rex Griswold Foundation, Patrick Costigan, and the Blandford-Rees Foundation.

10. Feel confident that contributions and efforts will be appreciated and utilized effectively and efficiently.

The MSA Coalition is overseen by a dedicated all-volunteer Board of Directors. Begining in June of 2020 the MSA Coalition enered a partnership with MCI USA to provide full time staff to the MSA Coalition. The MSA Coalition has always sent acknowledgements to donors and recognized fundraisers in its monthly newsletter and social media. Now with full time staff, including an executive director, the charity is striving to improve outreach to its constituents.

The MSA Coalition places a great deal of pride and emphasis on transparent governance and financial reporting. In addition to our audited financial reports mentioned above our Board of Directors sign ethics and conflict-of-interest statements each year. Through our 13-member independent Board of Directors, our Scientific Advisory Board, and our new Medical Advisory Board, we follow a system of checks and balances to ensure no one person has undue influence over important decisions. Additionally, our newly formed General Advisory Council involves experts and volunteers in a variety of professions to assist with our work to ensure we are doing the best job possible in building and implementing our programs.

As you evaluate the MSA Coalition, you will see low operating costs and a track record of funding meaningful programs designed to enhance quality of life, while collaboratively building hope for those living with multiple system atrophy.