A Closer Look: The National Multiple Sclerosis Society
We’ve heard about Walk MS, Ride MS, Run MS, and the other fundraising functions of the National MS Society (NMSS) but what else do we know? If you are like me, I was a bit fuzzy on the details and went to the top for some answers. Eddie Rauen, President of the Ohio Valley Chapter (OVC) which is also the chapter area for me personally, took time from his hectic schedule to talk with me about the functions of NMSS and how they support those of us living with MS. He gave me so much to share that I have split it into separate parts – how the Society operates at the national level and then a closer look at how his chapter office serves their clients and his personal connection with MS.
The national organization
NMSS has undergone a transformation over the past few years, according to Eddie, reducing 60 separate chapters of the organization to 37. Prior to this reorganization, all the chapters worked somewhat independent of the others and performed their own daily business operations and created their own identity. The realignment of chapters and combining many of them, allows for NMSS to create greater efficiency through the use of central services to handle necessary business operations such as data entry, human resources, and marketing; this consolidation frees up resources to be used for other services.
In this newer NMSS business model, the individual chapters still maintain their own regional identity and Eddie adds that this approach “lets each chapter be nimble enough to serve in the best and most effective ways for the clients by reducing their administrative costs” and leaving more time and resources at the chapter level to use for client services.
NMSS is looking at ways to move forward with consistency among the chapters, and identify the needs in a larger sense, Eddie says. One area of opportunity that has been identified is the lack of neurology services to people in rural areas due to a shortage of MS specialists. A high priority is to encourage physicians and researchers to become MS Fellows with the NMSS and focus their work on multiple sclerosis to help address this gap. He cites an example of success that his region will have two new MS neurologist relocate to one of the local MS clinics this year. These are doctors who are new to the specialty field of MS and not simply transferring from another region of the country, and their specific training in MS was funded through the NMSS Fellows program.
NMSS is expanding its education and outreach programs, looking at ways to deliver information to larger numbers of people, gained through sharing of combined efforts. He talked extensively about the finite resources of people, specialists and money, and how NMSS must be a good steward of all they are trusted to accomplish by looking at ways to deliver programs that impact greater numbers of people with MS.
I would be remiss if I didn't acknowledge there is sometimes controversy over NMSS, its leadership role in the fight against multiple sclerosis, and how their selection of research funding is done, but that is a separate piece of their story to be told in other ways than my focus here.
On the local chapter level
There are 6,000 people with MS identified within the area covered by the Ohio Valley Chapter, and the chapter strives to touch each and every one of them. They do this through a variety of offerings and programs, according to Eddie.
OVC offers a wide range of programming that everyone is eligible to participate in, including MS Aquatics and MS Yoga courses. There are seminars, talks and workshops sponsored through the area for people with MS, their partners, and caregivers.
Like all NMSS Chapters, there are local funds to give direct financial assistance to people who might find themselves with an emergency need. Beyond helping with late rent payments or overdue utility bills, Eddie says when faced with these problems the staff works to connect the person with resources in the community. He states it is not enough to just fix an immediate need - the cause of the problem needs to be addressed so the problem does not occur over and over. “We use our resources and knowledge to inform, educate and connect the client with the community resources they need to live their best and independent lives,” says Eddie. This financial assistance is meant to get people over a specific difficult event and not be an ongoing subsidy.
The NMSS chapters perform a variety of types of referrals. He said OVC has a big demand for information from people who need referrals that range from names of doctors and medical providers, to companies who can modify homes or private vehicles. He said often people call their office first for this information and it is a valuable service they offer.
They also handle referrals for people with significant medical needs and work with an agency that has staff who can visit with the client and assist with specialists, social workers, in-home care and insurance benefits. In any given month, Eddie says they have 12-15 people with MS using this service and the primary goal of this care is to identify the needs and then connect people with the appropriate specialists, home assistance and social workers. OVC has a person assigned to work with the agency personnel to develop a care plan that helps the person achieve greater independence. The challenge they face is to focus on what is happening now, says Eddie, but also looking at the intermediate and long-term needs of this special population.
At the core of what OVC does, according to Eddie, is “to help people connect in appropriate ways. We are not here to live people’s lives, but to help them determine their own direction. We give them that needed boost with assistance and guidance.” He says the services of the other NMSS chapters may vary in their regional needs but the basics are now consistent across the chapters.
And it’s personal
Eddie has been President of the Ohio Valley Chapter (OVC) for just under two years, first as an acting president and then being officially named to the position. He came to OVC in Cincinnati, Ohio, 9 years ago when he and his wife moved from Boston due to a relocation of her job. Prior to NMSS, he worked for St. Jude’s Children's Hospital, and all of his professional experience has been with non-profit organizations.
At the age of 38, Eddie is one of the younger NMSS leaders, and he points out the demographics of the various Chapter Presidents reflect a wide range of age, experience, and backgrounds, much like the diverse client population.
He shared that when he first began to work at OVC, his knowledge of multiple sclerosis was limited to interactions with a cousin of his wife who was diagnosed with MS in college, about 25 years ago, and she remains fiercely independent and has been an inspiration to him and all of the family. But just having inspiration isn’t enough to fuel the passion and commitment Eddie has for MS. Eddie says he already had a “deep appreciation for what people and families go through living with MS but it became very personal when my sister Jennifer was diagnosed with MS two years ago.” Her diagnosis came shortly before he was moved into the role of President for the Ohio Valley Chapter and it has only been recently that she is talking about it publicly. He says his big brother instinct to protect and help his sister has kept him from talking about her diagnosis until she was comfortable with him doing so.
He always felt a connection to his work, and continues to be inspired by people with MS who he describes as ‘incredibly resilient, impactful and motivated in how they live with a chronic disease.” With his sister’s diagnosis, Eddie’s work became even more meaningful to him and says “it changed me personally and professionally; the synergy between the two came together with her diagnosis,” and he has a clear vision of the reason he was brought to work with the National Multiple Sclerosis Society and the urgent nature of the work they do.
Wishing you well,
How do you feel before getting an MRI done?