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MULTIPLE SYSTEM ATROPHY COALITION NAMED “2018 TOP-RATED NONPROFIT” by GreatNonprofits

MULTIPLE SYSTEM ATROPHY COALITION NAMED “2018 TOP-RATED NONPROFIT” by GreatNonprofits

Award based on Outstanding Online Reviews

Charlotte, NC –The Multiple System Atrophy Coalition announced today it has been named a “2018 Top-Rated Nonprofit” by GreatNonprofits, the leading provider of user reviews of charities and nonprofits.

The MSA Coalition provides important services and programs to people around the world affected by Multiple System Atrophy, a rare and terminal neurodegenerative disorder striking in the middle years of life. People with MSA are often initially misdiagnosed as having Parkinson’s disease, but the rare disorder progresses much faster and affects multiple parts of the body’s neurological systems. Over the past 4 years, the MSA Coalition has funded 36 research grants totaling more than $1.6 million, resulting in greater understanding of the disorder and providing new hope and optimism to the MSA research community. No other MSA charity has funded research to this extent on a global basis.

“We are honored to be named a 2018 Top-Rated Nonprofit,” says [Cyndi Roemer, Board Chair, The MSA Coalition. “We are proud of our accomplishments this year, including our primary sponsorship of the 6th International MSA Congress, hosting the first-ever Global MSA Advocacy meeting, hosting our biggest annual patient and family conference, along with our continued dedication to encouraging and funding meaningful research. Importantly, the MSA community, those impacted by this horrible disease are recognizing our efforts with great reviews. As an all-volunteer run organization these positive reviews are greatly appreciated”

The Top-Rated Nonprofit Award is the based on the rating and number of reviews that the MSA Coalition received from volunteers, donors and aid recipients. “We found that The Multiple System Atrophy Coalition organization is about dedicated friendly volunteers with numerous experiences helping the community of people with a very rare incurable brain disease. They offer a tremendous amount of information specifically related to Multiple System Atrophy. As a caregiver for my wife with MSA-C, their organization is one of the first places that I go looking for answers, information or direction. They are a great organization that represents our MSA community around the world to try and find a cure. My Family and Friends thank all of the dedicated volunteers;” wrote Tom T., a n MSA caregiver.

“The Multiple System Atrophy Coalition is a great example of a nonprofit making a real difference for their community,” said Perla Ni, CEO of GreatNonprofits, “Their award is well-deserved recognition not only of their work, but the tremendous support they receive, as shown by the many outstanding reviews they have received from people who have direct experience working with the MSA Coalition.”

GreatNonprofits is the leading website where people share stories about their personal experiences on more than 1.6 million charities and nonprofits. The GreatNonprofits Top-Rated Awards are the only awards for nonprofits determined by those who have direct experience with the charities – as donors, volunteers and recipients of aid.

The complete list of 2018 Top Rated Nonprofits can be found at: https://greatnonprofits.org/awards/browse/Campaign:Year2018/Issue:All/Page:1

About GreatNonprofits

GreatNonprofits is the leading site for donors and volunteers to find stories and ratings of nonprofits. Stories on the site influence 30 million donation decisions a year. Visit www.greatnonprofits.orgfor more information.

 

Thank You from a Volunteer

Thank You from a Volunteer

I wrote a review for the MSA Coalition today on the Greatnonprofits website as a volunteer. This made me want to send a short note to say hello. Even though I knew the day would come that my mother would no longer be living with me on earth, you never know what to expect. How you will really feel. We just celebrated her 63rd birthday yesterday, the first BIG “first” of the year. Tough. Thank you again for the flower bouquet for my mom’s memorial service too.

Anyhow – I just wanted to say once again how much I appreciate the Coalition and each and every one of you. Life is funny though. It’s odd to say how glad I am that this Coalition exists and that I can call you friends…because I also wish with every bone in my body that the letters MSA meant nothing to me. That my family was still going about our own lives. But…this is the reality. And I choose instead look at the situation as…thank goodness the Coalition is around to provide immense and incredibly important support, advice, funding, etc. I can’t imagine what our lives would have been like if my family had to suffer through mom’s diganosis without this community. That would have been a different level of hell.

Thank you for all the support through my various fundraising events and projects. I am indeed riding the STP again this year (the big Seattle to Portland bike ride) and I will be doing it with two of my mother’s dear friends. I’ll be raising money and eager to keep in the fight. I am really hoping to make it to Vancouver in June to represent the Coalition with Pam too.

And lastly, thank you Don for helping put together that beautiful video of my mom, dad, and myself. I’ve probably watched the video 30 times. Thank you for the chance to hear my mom speak again.

Love and hugs to you all. Maybe see you at the 2017 conference. Let me know if I can help.

Erin Knutson Williams

Please watch this beautiful story about Debbie Knutson and how she impacted the life of her personal trainer while she was in the midst of her fight against MSA.