RARE Daily

Rare Leader: Cyndi Roemer, Board Chair, The MSA Coalition

September 9, 2021

The Basics
Name: Cyndi Roemer

Title: Board chair

Organization: The MSA Coalition

Social Media Links:

Disease focus: Multiple System Atrophy (MSA) is a rare neurodegenerative disorder that can cause a multitude of symptoms in any combination including impairments to balance, difficulty with movement, poor coordination, bladder dysfunction, sleep disturbances and poor blood pressure control. The disease was first known as Shy-Drager Syndrome. Currently, it is believed that MSA is “sporadic,” meaning that there are no established genetic or environmental factors that cause the disease. A few reports have described families with MSA, but this finding is probably very rare. Most often, the first clinical symptom a patient will note will be lightheadedness, dizziness, and episodes of passing out, but the first symptoms in some patients may include difficulty initiating movement, body stiffness, urinary incontinence, and increased falls. The autonomic nervous system is essential for controlling blood pressure, body temperature, digestion, urination, and sexual function, so MSA is largely a disease that impairs the autonomic nervous system. However, some patients don’t seem to have severe autonomic symptoms, thus emphasizing the range of symptoms from person to person.

Headquarters: McLean, Virginia

How did you become involved in rare disease: In 2004, our mom was diagnosed with multiple system atrophy. She started out with a diagnosis of Parkinson’s Disease, which is very typical with this disease.  She was referred to a movement disorder specialist as it became apparent that she was not responding to PD treatment. We went for multiple opinions including the Mayo Clinic, University of Pennsylvania Hospital, and Robert Wood Johnson. We covered all the bases. Ultimately, she was given the multiple system atrophy diagnosis. As part of that reality, we learned that a lot of people didn’t know what multiple system atrophy is. At that time, the MSA Coalition was the SDS/MSA Support Group, an online organization. There were other online resources but not nearly as much available as there is today. At that time, we’d never met another patient with MSA, and we were hungry to learn more. We struggled. We were always online; we were always asking questions. We learned a lot. We had to advocate for mom and explain the disease to a lot to medical professionals. We’ve come a long way since mom was diagnosed in 2004. Anyway, we lost Mom on Mother’s Day in 2009 when she lost her battle with the disease. After that my sister said we should do something to help others so they’re not in the position that we were in. From there, MSA New Jersey was born, a local regional group that my family founded, running support groups. In 2012, we worked with the SDS/MSA Support Group, to host the national conference here in New Jersey. The annual conference, which includes the participation of many doctors, specialists, and health support professionals, educates the patients and families, and also helps the professionals learn more.  The first few years I chaired the organization, and my brother and sister were both on the board. My sister now chairs it, and my brother is still on the board since I’ve moved on to the MSA Coalition. That’s how I became involved with the Coalition – because our local group worked very closely with the Coalition to provide support and share resources.

Previous career: Currently a senior professor of mathematics at Union County College

Education: BA and MA in math education a Fairleigh Dickinson University, EdD in math education from Columbia University Teacher’s College

The Organization
Organization’s mission: We provide a trusted sense of community while collaboratively enhancing quality of life for people living with multiple system atrophy. We are focused on the needs of patients and care partners, and research toward a cure (or at the very least toward earlier diagnosis and treatment). Our family’s story is not unique in terms of it taking a while to get the correct diagnosis, particularly since this disease presents itself so differently from one person to the next. We provide education for both the patients and care partners, to help them to understand the disease, the resources that they’ll need, and the kinds of long-term planning that’s going to be involved. We also provide education for the medical community. Movement disorder physicians, those who deal with autonomic issues – they know about MSA, but what about the general neurologist? What about the primary MD? What about the allied health services like physical therapy, occupational therapy, and so on? The organization sponsors a number of professional educational conferences, making certain that multiple system atrophy is part of the curriculum of those conferences too. We are doing what we can to provide support through our call line, social media groups, support group listings, and in-person meetings at our annual conference.

Organization’s strategy:  Our strategic plan is aligned with our mission. Within the area of research, we’ve contributed more than $2 million to MSA-focused research. What we’ve done initially, when we started the research program, was to provide seed grants. Now we’re expanding that focus. In addition to seed grants, we have core areas that we’re looking at in our research, building collaborative approaches to get some of the critical masses for the data we need. We have the support of a world class Scientific Advisory Board to review research proposals to be funded.  Our conference has grown year by year and continues to grow. We started offering live streaming so that it was available to a wider audience. Amidst the global pandemic, for the past couple of years our conference has been offered virtually. When we get back in-person, there’ll be a hybrid approach so that we can expand access to people while providing in-person connections. In keeping with our educational goals, we sponsor professional conferences and presentations in the medical and scientific community, as well as educational programs and materials for our patient and care partner community.  For support, we have a great 800 line for people to call for peer assistance, along with our online groups. Much is done virtually for the greatest outreach. And, again, community building, both in terms of our base, the community that we serve, as well as those we work with in the professional community and among charity partners.

Funding strategy: We are committed to funding worthwhile projects that follow our mission and bring forth results for the MSA community.  We work to keep costs down while providing premier services and supporting research. Traditionally, this organization has relied heavily on grassroots fundraising. It comes from those we serve, or friends and relatives of those we serve. I don’t see that fundraising source going away because of the reality of how people choose to donate funds to charitable causes. They donate based on what they know and what they have firsthand experience with. However, we don’t want to place an undue burden on this community. We rely on corporate sponsorships – we have a number of partners who have worked with us for years providing funding resources, and we have been continuing to build those funding resources and programs. We are planning other types of opportunities.

What’s changing at your organization in the next year: Mostly expansion.  This idea of moving our research more in this focused direction that involves collaboration among the brightest MSA researchers around the world, and more in terms of expansion of our educational materials, for which we have put together a task force among the Board and volunteers. Last year our virtual conference had more than 800 registered participants representing more than 30 countries worldwide. As we expand this educational opportunity and look toward next year, we hope we can bring people together in person, while also offering virtual options for those who cannot physically attend meetings. Plans for expansion of support services and funding strategies are also in development.

Management Style
Management philosophy: Collaboration is important to us in terms of a management style. We try to keep open communications, not only among our team, but we’ve got a great newsletter to try to keep our public informed. Respect is important in working with each other as well as those professionals with whom we partner—the doctors, the researchers, scientists, and other charities. And of course, treating the population we serve with dignity. 

Guiding principles for running an effective organization: Strong communication and respect are certainly part of it. Adhering to our strategic plan that relates to our four pillars, ultimately representing our mission. Transparency is important to us. We have our 990s and relevant business documents posted, along with members of our team. And always remembering, it is about the patients and their families – that must guide all we do.

Best way to keep your organization relevant: Listening, always learning—even from our mistakes. Keeping on top of the questions that are coming to us from the patients and our partners and seeing how we can best meet those needs. A recent example is the Covid pandemic, we were concerned about people’s vulnerabilities and concerns they had. How were they coping? What were their questions? We were able to reach out to some of our contacts in the medical community and quickly put together a webinar. We had a physician speak to common questions that were asked from patients and families and provide a basic core of information, then opened it up to Q and A so that people could get answers they were seeking. Once these vaccines were developed, people starting to ask questions about getting the vaccine. We were able to reach out to our professional resources very quickly to put out a statement to them in terms of what the latest development regarding the booster shot means to MSA patients.

Why people like working with you: I try to practice what I preach in terms of collaboration. When I came on the board and eventually became chair, I moved towards the development of committees so that there would be good input among Board members based on interests and areas of expertise. I would hope that, more than anything, people recognize my dedication and commitment, and having a vision for the future to build sustainability so that we can continue to meet the needs of this population. It’s a unique situation. Nonprofits are businesses, but we are a nonprofit to serve a community. What do we want at the end of the day? I guess we want to go out of business, right? We don’t want to have to be here anymore because a cure has been found, and we’re not needed.

Mentor: I can’t say that I have a mentor within the MSA community. I’ve done non-profit work throughout my life. We learned a great deal building our local organization as a family, and then getting involved in the Coalition board and learning from everybody. I learned different things from different people and the expertise they brought to the table. I don’t know that I can so much say a single mentor, but through these experiences, many people contributed. And at the end of the day, I think I have to credit my mother. Not just as the patient who led us to working with multiple system atrophy, but my mother was that person that was always doing for others, involved in activities that supported others. Seeing her commitment, her passion, her depth of caring about others, was impactful to me in terms of turning around and saying, “Yeah, I need to do that too. I need to find a way to do that.”
On the Job
What inspires you:  The patients and care partners. Different people handle things differently. Some people struggle more than others, but I’m going to tell you that in the people with whom I interact, and it started, again, with my own mom, I’ve seen the spirit, the drive, the love, the living, the maintaining hope, the maintaining positivity as best that they can. I have seen the willingness to share—to get on a support group call or meeting, and say this is what I learned, here’s how I cope. It is an incredible community.

What makes you hopeful: In part, it’s the people, again. I have to credit the people who continue to be there and support each other. Certainly, the strides that have been made in research. I’m going to sort of use the baseline as my family’s own experience, going back to that 2004 diagnosis and what we experienced. What I’ve seen is growth. I’ve seen growth in the Coalition. I’ve seen growth in other charity organizations. I’ve seen growth in their connections, working together. I’ve seen growth in terms of medical knowledge as a result of research. So that MSA-focused research and what we’re seeing now, in terms of more collaboration and working together, that’s only going to help further research and findings, to move along toward better and earlier diagnosis, treatment, quality of life, and ultimately a cure.  I see growth in education and support. Hopefulness is coming from all of the things that have been accomplished that say we’re moving in the right direction. It’s still difficult. I’m not saying that things are exactly where we would like them to be, but there’s been improvement. That gives me hope that we are on the right road.

Best organization decision: I think it’s also the most difficult decision that we had to make and that is hiring staff. The Coalition has been around for more than 30 years now, and it’s always been volunteer-run. But that growth that I talk about also made it difficult for a group of volunteers, many of whom also have full-time jobs, to do it. With that said, there’s always the sense of, we want to make sure that we function cost-effectively, and we were able to do it for so many years voluntarily. We did it well right through the conference in Orlando, through building an outstanding research program, which as I said, contributed millions of dollars to MSA-focused research.  But as the population and their needs grew, so did the need for more fundraising, more research, more education and support—all of these things grew. It was that hard reality that we can’t do it all. We put funding towards staff, towards professionals that can help get the job done with the goal of meeting the needs of the community. Ultimately the hardest decision turned out to be the best decision—getting staff to continue moving things forward and provide much needed services.

Hardest lesson learned: We can’t do at all. As we continued to try to do it all before, we brought on staff, I think that cost us some time. We didn’t move forward with some of the things that were important priorities for us. When you see that happening and recognize that we’re not getting the job done at the speed we needed to be getting the job done, you have to acknowledge that a change is needed. Fortunately, we were in a secure place where we able to do so.

Toughest organization decision: As I said in speaking about our best decision, to hire staff because we were concerned about costs, and about losing some of the personal approach in our services.  But we’ve (Board members who have a close tie to MSA) stayed involved and we are in a secure financial position. It has to be about getting the job done to meet the needs of the community.

Like least about the job: Well, the fact that we’re dealing with a debilitating terminal disease, so dealing with the reality of that. Knowing the eventuality is difficult as we do get to know patients and then we lose them. That’s tough. Really tough.

Pet peeve: While I understand it, I still find it frustrating that the rare disease community has such a challenge in gaining awareness and funding.  I know people support what they experience in their lives. But there are small communities that need help – a voice, hope there will be a cure.  I wish people would be more proactive about learning and supporting those in this situation.  My personal pet peeve is disrespect.

First choice for a new career: I’m a math professor. But I’ve always been drawn to writing and the creative process. I think that’s one of the things I like about my work with conference planning.  I’ve done a little writing, not published, but I’ve done some short stories. Maybe someday, and I can include MSA giving a voice to this community…

Personal Taste
Most influential book: I just can’t say that I have a most influential book. There are books that I’ve liked and that I’ve learned a lot from. I can think back to my AP English days in high school where I read, Cry the Beloved Country. I love mysteries, and even romance books. I can’t say that there’s one book that necessarily influenced me or a movie that influenced me. I go back to my influences coming from people – first and foremost, my family, my parents were very influential. My grandparents as well.

Favorite movie: Miracle on 34th Street

Favorite music
: Trop Rock. I’m a parrot head. But I like many other genres too.

Favorite food: I love pizza and my fine dining food is a good steak.

Guilty pleasure: Coffee Royal Ice Cream. Coffee ice cream with fudge going through it.

Favorite way to spend free time: With family and friends and my pups. It’s not so much what I’m doing but the company I keep. I love horseback riding, parasailing, rollercoasters, and rides in my ragtop. 


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