Support Hotline: (866) 737-5999 info@multiplesystematrophy.org
A Charity Footprints powered Global Virtual Walkathon is Underway to Raise Money and Awareness for Multiple System Atrophy (MSA)

A Charity Footprints powered Global Virtual Walkathon is Underway to Raise Money and Awareness for Multiple System Atrophy (MSA)

The MSA Coalition has embarked on a partnership with Charity Footprints Inc. and other MSA charities to recruit a team of 250 walkers and fundraisers for its Global MSA Walkathon. The goal of this virtual charity walk is to cover 52,000 miles and raise $250,000 between March 15, 2019 which is during MSA Awareness Month and October 3, 2019, which is World MSA Day. Team members track their steps via a wearable fitness tracker or a smartphone app while walking locally at a time and place of their choosing.

CHARLOTTE, NC – The Multiple System Atrophy (MSA) Coalition today announced that a multi-charity collaborative effort is now in progress to recruit at least 250 walkers around the world. Using an innovative Virtual Racing platform from Charity Footprints Inc., the team of walkers track their daily steps via a wearable fitness tracker or a smartphone app. In real time, participant steps are being tracked on the Global MSA Walkathon Map. The goal is to walk 52,000 miles around the world while raising $250,000 by World MSA Day, 2019. Along the way, the team will virtually visit important MSA research centers, treatment centers, and other MSA charities. The walk will begin on March 15, 2019 to commemorate MSA Awareness Month. Walkers can begin signing up for the virtual event on March 15, 2019.

“The walkathon is viewed as a critically important event for bringing MSA charities together on a global awareness initiative. As a rare disease, the best way to build awareness for the plight of those affected by it, is to activate the MSA community as a whole into a unified event,” stated Don Crouse, Vice Chairman of the MSA Coalition. “In partnership with Charity Footprints and other MSA charities we are able to create one strong voice to inform the world about Multiple System Atrophy. At the same time, we are hoping to recruit new advocates and fundraisers so that we may be able to increase our impact on improving the quality of life for those affected by MSA. Our goal is to continue building hope that someday disease altering treatments and a cure are found.”

The following MSA charities are collaborating in this Global MSA Walkathon: MSA Trust (UK), MSA-AMS (Belgium), MSA NJ (USA), Cure MSA (USA), the Rex Griswold Foundation (USA), Blandford-Rees Foundation (USA), and Move Over MSA (USA).

“AMS-MSA Belgium is looking forward to the Global MSA Walkathon virtually visiting us. The walkathon is an important awareness initiative as we continue to fight multiple system atrophy,” said Ritje Schouppe-Moons, Chief Executive of the AMS-MSA Belgium, organizer of the yearly’JiePie Award for MSA Research’ and Spokesperson for World MSA Day, observed on October 3rd. “Collectively we count miles/kms walked and attempt to circle the globe. All to symbolize our unity in the fight against MSA. We continue to be committed to working collaboratively with our MSA colleagues on important initiatives that lead to the advancement of knowledge around understanding MSA and supporting those living with MSA, their families, and care partners. We very much appreciate the collaborative team-building efforts of the MSA Coalition in this regard.”

“MSA NJ is very excited to be a part of this amazing team of MSA stakeholders. The fundraising and awareness generated for multiple system atrophy will certainly help the cause.” said Kymberli Roemer, Chairperson of MSA NJ. “The MSA Coalition has been a leader in facilitating collaboration among MSA charities. The Global MSA Walkathon is is an excellent example and we hope it becomes an annual event that truly makes a difference. We are proud to be a part of the team and hope to see New Jersey well represented among the walkers and fundraisers.”

The Global MSA Walkathon is being powered by Charity Footprints, an innovative platform designed to promote fitness and encourage charitable giving. Because MSA is so rare it is very difficult to organize in-person charity walks and other live fundraising events. We are confident that this virtual event will motivate people to become MSA advocates and fundraisers, and will provide a jolt of energy to new volunteer recruitment. A key feature of the platform is that it allows people to gift registrations to other family members, friends and colleagues – through a Pay-It-Forward integration. MSA strikes in the mid-part of life with a typical onset age of 45-65 years. As such, the MSA Global Walkathon offers an opportunity for younger generations to fundraise in honor or memory of a loved one with MSA.

“Charity Footprints is thrilled to be the official technology partner of the Global MSA Walkathon,” said Rahul Razdan, the Chief Executive Officer of Charity Footprints Inc. “It is extremely rewarding to see our platform being used by an ultra rare disease community to build awareness and collaboration on a global scale. Multiple System Atrophy Coalition is our first non-profit partner to undertake a walk around the world and we wish them nothing but success. We will be cheering loudly as they near their fitness and fundraising goals!”

A successful Global MSA Walkathon will allow the MSA Coalition to increase its funding for worldwide initiatives to better understand and treat Multiple System Atrophy. Over the past 4 years, it has awarded $1.6 million to fund 36 research grants from around the world aimed at identifying diagnostic biomarkers and potential treatments. The Coalition has been the primary sponsor of multiple International MSA Congresses, the American Autonomic Society Congress, and the European Federation of Autonomic Societies Congress, and has awarded travel grants to many young MSA investigators. The MSA Coalition is currently developing a new research program to better target its funding efforts towards meaningful progress in improving diagnosis and treatment options.

“We are extremely excited to embark on this unifying walk around the world. The MSA Coalition prides itself on our strong track record of working collaboratively with MSA charities, researchers, autonomic centers of excellence, and corporations. Since hosting the 1st Global MSA Advocacy meeting last year, we are eager to maintain momentum on joint activities for the MSA cause. Our walk will highlight our collaborations as we “virtually” visit each partner in the fight against MSA,” said Dr. Cyndi Roemer, Chair of the MSA Coalition. “Another very exciting aspect of the Global MSA Walk-a-thon is its potential appeal to multi-generational participants. One of our hopes is to see the parents, siblings, children and grandchildren of multiple system atrophy patients walking and fundraising for the MSA community. Together, we can make progress as we enhance quality of life, while building hope for those living with MSA.”

Join the Global MSA Walkathon or support it with a donation! The Global MSA Walkathon is also seeking corporate sponsors and has several sponsorship packages available.

Multiple System Atrophy Online Survey

Multiple System Atrophy Online Survey

Take the MSA survey and share your experience

Reposted from the Dysautonomia Center at NYU

It is important to know the impact of an illness on the lives of people it affects. Patient surveys are an important way to better understand from patients themselves what matters the most. This powerful approach is even more important when it comes to population sampling in rare diseases when patients are located across different cities, states, and countries.

Multiple system atrophy (MSA) is a rare ultra-aggressive form of Parkinsonism that has no cure. The Center is part of the Autonomic Disorders Consortium – funded by the National Institutes of Health (NIH) to focus on rare diseases, like MSA. When researchers at the NYU Dysautonomia Center joined forces with MSA Coalition – the largest patient advocacy group for MSA – they knew that they needed an MSA patient survey to know about the impact of MSA on a patient’s health.

They drew up a short list of questions that honed in the key features of MSA and what people have done to manage their symptoms. The survey went live to MSA patients that are part of the Contact Registry (click here to register). With the help of the NIH, in just a few short weeks, it received over 300 responses.

“The collective patient voice becomes more clear the more people we can get to participate,” explained Dr. Lucy Kaufmann – Principal Investigator. Chronic neurological conditions like MSA often have a great impact on individuals because of their relentless progression. It’s important to capture this. “You can trawl through a patient’s medical records for hours, but the information relates only to symptoms or complications for which that patient sought medical attention for.” In other words, there is a lot of information missing like when a symptom started, how quickly it deteriorated, and how the patient feels about it, which you can’t necessarily just pull from the clinical chart.

This is why we are calling on all MSA patients to participate in the MSA patient survey. We encourage you to lend your voice and share the link with other members of the MSA Community.

The results of the MSA survey will be tabulated, analyzed and shared. We hope to be able to complement our understanding of the evolution of the physical symptoms with other dimensions; like how this affects peoples lives? How they handle the complications of MSA? What type of care are patients with MSA receiving in cities, suburbs or rural communities?

By collecting this precise data focused on the symptoms of MSA we hope we can advances our understanding of what is important to families living with this disease and translate this into better care for the entire MSA population.

How to participate?

Already Registered?

Check your email inbox for a link to participate in the survey.