Multiple System Atrophy Coalition Partners with MCI USA Association Solutions to Enhance Services, Programs and Community Relations

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MCI USA Association Solutions will be providing staff and services to manage the day-to-day functions of the MSA Coalition. Spearheaded by a full-time Executive Director, key areas of responsibility for MCI USA include event planning, public relations, advocacy, educational programming, management of the global research grant program, and accounting & donor management services. The MSA Coalition Board of Directors will oversee MCI USA’s activities supporting the organization.

The MSA Coalition’s new partnership with MCI USA will enable us to enhance our activities around the four pillars of our mission: providing credible and relevant education, offering trusted emotional support, building a unified MSA community, and funding patient-centric research.

The Multiple System Atrophy Coalition (MSA Coalition), the leading nonprofit funder of global MSA research, today announced a strategic partnership with MCI USA’s Association Solutions division. The announcement signals a major milestone for the MSA Coalition as it continues its remarkable growth and expansion of service and programs to the multiple system atrophy community. As of July 1, 2020, MCI USA’s dedicated team of nonprofit professionals began supporting patients, care partners, and medical professionals on the frontlines of the battle against multiple system atrophy, a rare and rapidly progressive neurological disorder that affects approximately 250,000 people in the middle years of life worldwide.

Supporting the MSA Coalition Board of Directors, a full-time Executive Director will manage various experts at MCI USA as they provide skilled support to enhance and expand key services and programs such as educational programming, planning of the world’s largest MSA patient and family conference, advocacy, public relations, fundraising, and donor support. MCI USA will also manage day-to-day operations and provide accounting administration.

“This is a pivotal moment in the MSA Coalition’s history. Over 30 years ago our organization was born out of the resolve of one caregiver to make a difference in the lives of other MSA families. Since then our volunteer Board of Directors have remained ‘hands-on’ performing all administrative functions without hired staff. Now we are excited to take our programs and initiatives to the next level with the professional support of MCI USA,” said Cyndi Roemer, Chair, Board of Directors, the MSA Coalition. “The MSA Coalition’s new partnership with MCI USA will enable us to enhance our activities around the four pillars of our mission: providing credible and relevant education, offering trusted emotional support, building a unified MSA community, and funding patient-centric research that is so important to finding a treatment and ultimately a cure for MSA. An exciting benefit of the management support offered by MCI USA is that it will allow the MSA Coalition Board to focus on governance, big-picture strategies, and personal relationships with those in the MSA community. The Board will also oversee the work being conducted by the team at MCI USA to ensure it is efficiently and effectively advancing our strategic plan.”

The MSA Coalition’s decision to move to paid staff was part of a two-year strategic planning process focused on how best to bring real hope to those suffering from MSA. Additionally, the MSA Coalition recently announced strong financial results for 2019 with revenue of $4.2 million. The nonprofit ended the year with net assets of $5.4 million, of which $3.3 million is restricted, primarily to research. The MSA Coalition’s strong financial position assures sustainability of North America’s largest charitable provider of MSA support, education, and research funding.

“With financial security and a well-designed strategic plan in place that required professional help to execute it, an extensive and thorough search was conducted to identify the best association management company to carry out the strategies approved by the MSA Coalition Board of Directors,” stated Carol Langer, Treasurer, the MSA Coalition. “Starting with sixteen responses to our request for proposals, the MSA Coalition Board ultimately determined MCI USA to be the best fit for meeting the needs of the MSA Coalition and the community it serves.”

For nearly 30 years, MCI USA’s Association Solutions division has helped advance the goals of its mission-driven nonprofit clients. With more than 350 employees in six U.S. locations, MCI USA provides results-oriented experience and expertise in full-service nonprofit management, strategic planning, fundraising, community building, creative services, technology solutions, event conceptualization, and more. MCI USA’s healthcare clients include the Association for the Advancement of Wound Care, Association of Women Surgeons, Interstitial Cystitis Association (ICA), Psychiatric Rehabilitation Association (PRA), and RESOLVE: The National Infertility Association – all groups that combine an essential mission with a need to educate clients and patients, professionals, and the general public about critical health care issues.

“MCI USA is proud to welcome the Multiple System Atrophy Coalition as a strategic partner,” said Erin M. Fuller, FASAE, CAE, President, Association Solutions, MCI USA. “We look forward to collaborating with the MSA Coalition Board and community to improve the lives of people impacted by this terrible disease through support, education, research, and advocacy.”

In recent years, the MSA Coalition has greatly expanded the scope of its programs. From planning and hosting the world’s largest MSA patient and family conference, to funding more than $2 million in research seed grants, and providing important educational content such as the "What You Need to Know” document, the MSA Coalition’s volunteer Board of Directors has contributed countless hours to the cause. Additionally, Board members have attended scientific conferences around the world, set up personal fundraisers, written website content, liaised with medical and nonprofit experts, and more.

“Simply stated, the MSA Coalition has outgrown the ‘all-volunteer’ model which it pioneered in the MSA space dating back to 1989 when we were known as the Shy-Drager Support Group. Ten years ago, the Board of Directors, comprised of Dr. David Robertson, Dr. Thomas Chelimsky, Vera James, Judy Biedenharn and I developed the first iteration of our strategic plan focused on broadening our mission from primarily support and education to include a much stronger focus on meeting the needs of those impacted by the disease,” stated Don Crouse, Vice-Chair, the MSA Coalition. “This change in focus led to eight years of remarkable growth in revenue, services, and programs. In 2012 we relaunched our nonprofit as the Multiple System Atrophy Coalition with an expanded mission. 2013 was highlighted by the announcement of our global MSA research grant program and the awarding of our first research grants. Since then we have more than doubled our Board of Directors, increased our outreach to the global MSA community, doubled the size of our annual conference, and awarded over $2 million in research grants. As we grew, we realized that continuing to operate with an 'all-volunteer' model would hinder our ability to provide patients and their families the best support and services possible. With that realization, the time was right to hire professional staff to help us take the MSA Coalition to the next level.”

The MSA Coalition support line will continue to be run by MSA Coalition volunteers with experience as MSA care partners. Those in need of emotional and educational support can continue to call (866) 737-5999. The Board remains passionate and committed to this cause and looks forward to maintaining relationships with the community as MCI USA provides necessary support to increase awareness and fulfill the MSA Coalition’s important mission.

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About the Multiple System Atrophy Coalition
The Multiple System Atrophy (MSA) Coalition is a positive beacon of hope standing up to a little-known, rare, insidious disorder. Since 1989, the MSA Coalition has been devoted to improving the quality of life and building hope for people affected by multiple system atrophy by focusing on a four-pillar mission:

  • 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.

Thousands of participants benefit from the annual MSA Coalition Family Conference, which is live streamed and posted online. With multiple online discussion groups and a dedicated support line, someone is always there to help. As the host of the first-ever Global MSA Advocacy meeting, the MSA Coalition works with other like-minded charities to foster a community of support and care, while also playing an important role in global MSA research efforts.

Learn more at http://www.multiplesystematrophy.org/ or call our support hotline toll-free at 866-737-5999 or our business line at 866-737-4999.

About Multiple System Atrophy
Multiple system atrophy, previously known as Shy-Drager Syndrome, is a rare and fatal disorder with less than 15,000 Americans diagnosed at any given time. According to the National Institutes of Health, "Multiple system atrophy is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells (neurogenic orthostatic hypotension) and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of balance and muscle coordination." MSA affects both men and women primarily in their 50s. MSA tends to advance rapidly over the course of 6 to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no cure or remission from the disease.

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