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 partnered 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 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.
I have known about this group since it was called the Shy-Drager Syndrome Support Group back in 1998 when it was the only place you could find any info on MSA. There were about 100 email uses on the Vanderbilt list server and we learned from each other about caregiving and meds others were using at the time.
Many people from that group are or have been on the present Board of the MSA Coalition and are presently working hard to support MSA Research as well as having yearly MSA conferences around the USA. I have attended those conferences in VA, NJ, TN, WI. MA CA and OH and learned a great deal about MSA. They also have 57 pages of info on MSA at https://www.multiplesystematrophy.org/about-msa/ That is why I give to the MSA Coalition every year, I feel they are out best hope for a MSA cure as well as real help for MSA caring.
If you want to see the best MSA research funded, the MSA Coalition is clearly the only choice. I am not aware of any other multiple system atrophy charities in the US that have funded any meaningful research. I really like the fact that their Scientific Advisory Board reviews and scores each grant they receive. This is the main reason I support only the MSA Coalition. They are getting stuff done!
hello.. i have a dear friend who has been diagnoses with MSA .. was wondering what type of support he could get and is funding available ????
I have thought about fundraising for MSA as I was recently diagnosed
Have looked at the increase in clinical trials since the ice bucket challenge was done.
I would be glad to do something along this line to make more people aware Snd raise funds to aid in more clinical trials and a cure.
We have fundraising resources including tips and ideas on both online and live fundraising events. Here is the link: https://www.multiplesystematrophy.org/msa-fundraiser/