by MSA Coalition | Dec 23, 2015 | MSA Coalition Press Releases
An eventful year of building awareness for MSA has led to fundraising success
Charlotte, N.C. – December 24, 2015: The Multiple System Atrophy (MSA) Coalition today announced it is currently in third place in the CrowdRise Holiday Challenge, a fundraising contest with hundreds of 501c3 organizations participating. Fueled by generous volunteers and year-long awareness efforts including its MSA Can’t Take campaign and the holiday crowd funding push, the MSA Coalition is on track to have its best fundraising year ever.
In the CrowdRise Holiday Challenge alone, the MSA Coalition has raised over $123,000 since Giving Tuesday, with just $27,000 to go before a generous matching gift offer of $150,000 will expire on December 31, 2015. The MSA Coalition is also vying for one of the three CrowdRise challenge grand prizes awarded to the top three donation-generating charities ($100,000 for first place, $50,000 for second and $25,000 for third place). One hundred percent of all donations, matching gifts and prize money is earmarked to fund MSA research grants in 2016.
“We are determined to maximize the $150,000 matching gift pledged to us for the CrowdRise Holiday Challenge and to secure at least a third place prize,” stated Pam Bower, MSA Coalition Board Officer. “If we can raise another $27,000 before year-end and maintain our current third place position, the MSA Coalition will have secured at least an additional $325,000 for our MSA research grant program in 2016. That is enough funding to cover six or seven additional grants, which will strive to find treatments and hopefully a cure for MSA.”
Research remains the main focus for funds raised by the MSA Coalition. Its scientific advisory board is composed of renowned global MSA researchers, scientists and physicians, who collectively serve as the reviewing body for the research grant program. In October, the MSA Coalition announced that ten research grants were awarded, totaling $422,000. To see all the projects funded by the MSA Coalition, please visit https://www.multiplesystematrophy.org/research/funded-projects
“We are grateful for the ongoing efforts of the MSA Coalition,” shared David Robertson, MD, Professor of Neurology, Vanderbilt University Medical Center and chairman of the Coalition’s scientific advisory board. “Because of its investment in the MSA community and its relentless pursuit of fundraising, we continue progressing toward defining a cause, pursuing treatment and finding a cure for this disease.”
The MSA Coalition also had a strong year in terms of its other core objectives of providing education to physicians and the community, advocacy and awareness, and providing emotional support and guidance to patients and caregivers. March is MSA Awareness Month and the Coalition took a leadership role on social media to generate conversation and awareness for the disease. The organization also partnered with the Autonomic Rare Disease Clinical Research Consortium (ARDCRC) to help promote awareness and secure funding for rare disease research within the National Institute of Health (NIH). Throughout the year, MSA Coalition volunteers attended and participated in many important medical conferences including the American Academy of Neurology, the Movement Disorder Society and the American Autonomic Society. The MSA Coalition also funded continuing medical education programs for primary care physicians to improve diagnosis and treatment of multiple system atrophy.
In October, the MSA Coalition once again hosted its Annual Patient and Family Conference. This year, patients and families gathered in Seattle, Wash. to hear presentations by expert neurologists familiar with MSA. Interaction among families in patient and caregiver breakout sessions was the highlight for those attending; for many, this conference is the only opportunity to meet others currently experiencing the disease. Attendees also received an update on the state of MSA research. To see more from the conference, watch the Call to Action video here: https://www.multiplesystematrophy.org/resources/video.
In November the MSA Coalition launched a new MSA awareness initiative. The disease takes many things from patients including their ability to work and be productive, to do simple daily activities like walking to the mailbox and eating without help, and ultimately life itself. The #MSACantTake campaign is intended to emphasize what MSA Can’t Take from those affected by the condition, such as the will to fight and determination to find a cure.
“The work of the MSA Coalition will continue for as long as the disease is impacting lives,” said Judy Biedenharn, Chairman of the Coalition. “Of course, our goal is to someday discover a cure and thereby make our organization obsolete. Thank you to our supporters; we look forward to 2016 and the ongoing progress we will make together with patients, caregivers, friends and donors.”
In 2016, planned highlights include MSA Awareness Month (March), the Coalition’s sponsorship of the fifth International MSA Congress in Salerno, Italy (April 22-23); and the next Annual Patient and Family Conference in New Orleans (October).
by admin | Dec 21, 2015 | MSA-Blog
The Will to Help Never Leaves
Vera James lost her husband, Fred, to Multiple System Atrophy in 2003, marking her transformation from experienced caregiver to vital resource for countless others. In addition to serving on the MSA Coalition board of directors, Vera answers calls on an MSA Hotline in her home, at all hours – and that, she says, is just fine.
Vera’s introduction to Multiple System Atrophy mirrors the experience of many who have dealt with this disease. “Fred was initially misdiagnosed with Parkinson’s, and when we finally got a correct diagnosis, the physician knew very little about Multiple System Atrophy,” says Vera. “I found the information I needed online, first through a Yahoo! MSA support group and then from the MSA Coalition, which the Yahoo! group pointed me to.”
As Fred’s condition deteriorated, Vera used the information she received to sharpen her caregiver skills. “At first, he could do most everything for himself,” she says. “But I gradually took over giving him baths, helping him get dressed, helping him get out of chairs, and eventually speaking for him and even rolling him over at night so he could get a little more rest.”
Through it all, Vera says, “Multiple System Atrophy couldn’t take away our love for each other. If anything, the disease brought us closer together. We learned a lot about our commitments to each other and the meaning of our wedding vows. And even though it took Fred, Multiple System Atrophy could not take the fact that I care deeply about those who have this disease. I’ve channeled my passion since then to helping others face this disorder.”
In fact, Vera attended her first annual MSA Coalition Patient/Caregiver Conference shortly after Fred’s passing; it was the first of the conferences held near her home. As a follow-up to conversations she had there, Vera agreed to the installation of a toll-free support line in her home, followed by an appointment to the MSA Coalition board.
As a board member, Vera wears multiple hats, from fulfilling requests for memorial envelopes to mailing DVDs and printed information to assisting with the annual conference set-up, which is especially complicated given the special needs of attendees. When asked to name the most important aspect of the MSA Coalition, Vera says: “Everything. The research is fantastic, and grants have grown exponentially thanks to generous donations. The information we provide is absolutely essential to people who are dealing with this rare disease. The conferences enable patients and caregivers to form deep bonds with others they would otherwise never have met. All aspects of the MSA Coalition are important – this is full-spectrum support.”
Year-round, Vera answers hotline calls from patients, caregivers, hospices and physicians, an activity of which she never tires. “I get to be a lifeline, helping to take away fear with information,” she says. “Most first-time calls are from newly diagnosed patients or caregivers whose loved one has just been diagnosed. Then they call back whenever they need more information about equipment, speech therapy and what to do for this and that. What’s most common among the callers is the love that drives them to make things better and the determination to keep going. On a few occasions, the caller has been just really down at the moment and says, ‘You don’t know what it’s like.’ I assure them that I do know what it’s like, telling them, ‘I’ve been there’.”
To learn more about Multiple System Atrophy, the MSA Coalition’s efforts to battle this rare disorder and how you can help, please visit www.multiplesystematrophy.org.
Support Vera’s fundraiser on CrowdRise! Please visit: https://www.crowdrise.com/MultipleSystemAtrophyCoalition/fundraiser/verajames
by admin | Dec 18, 2015 | MSA-Blog
Beating back Multiple System Atrophy by ‘Winning the Day’
In 2014, the MSA Coalition selected Tom Looney to be its first patient representative board member. A highly successful executive before being diagnosed with Multiple System Atrophy in 2008, Tom is keen and insightful, with a determined, positive attitude about his condition. In his new role, Tom serves as a patient-centric voice for other with this rare disease.
“I’m very open about my own experiences and approaches of living with Multiple System Atrophy,” said Tom. “I feel a kindred spirit when sharing helpful information back and forth with patients and caregivers, and I try to share all the best ideas forward online.”
Multiple System Atrophy requires a daily commitment to what Tom calls “Win the Day!” His approach is to focus on winning each day and doing it all over again the next day – with a regimen of diet, exercise, therapies, medications and supplements – to manage symptoms, strengthen his body and maintain a positive attitude.
“The biggest challenge with Multiple System Atrophy is that there are no clinical best practices, and each patient is unique,” said Tom. “The relentless progression of autonomic neuropathy poses the biggest challenge for me; nerves responsible for the proper function of my internal organs and life-sustaining systems are highly compromised. This is a game we can’t completely win until there’s a cure, but we can win a heck of a lot of days along the way.”
Tom recently created the “One Less Thing” fundraising campaign. He had noticed that many Multiple System Atrophy patients express the advancement of their symptoms in terms of things they could no longer do – things they used to take for granted, like simply driving to the store to pick up a quart of milk.
“The last time I communicated with the late great Chef Kerry Simon,” said Tom, “he put it this way: ‘Man, I am racking up a list of one less things I’m able to do!’ That led to a ‘One Less Thing’ concept where people express what one less thing they would sacrifice in order to donate something to the MSA Coalition – like giving up that daily cup of barista coffee for a month and directing a gift of $100 in the spirit of ‘one less thing’.”
Tom’s caregiver and wife, Trish, says that “The key thing that Multiple System Atrophy can’t take away from Tom is his can-do spirit – I sometimes have to keep him from overdoing things,” says Trish. “Multiple System Atrophy symptoms can worsen when the patient gets too tired or too stressed, and we always remember to take time out to quietly celebrate each day won.”
Trish’s efforts help to keep Tom’s time and energy free to focus on health, wellness and online interaction with patients and MSA Coalition members. In addition to managing medications and supplements, doctor appointments and physical therapy treatments, Trish keeps Tom’s daily healthy diet intact. She also makes sure that the couple’s two young sons understand that Dad’s doing as well as he can, explaining his condition to them in age-appropriate details and language.
“I’m especially thankful to the MSA Coalition for the valuable caregiver tools it has produced over time,” says Trish. “Today’s caregivers stand on the shoulders of those who have figured this out with far less quality information and support. Going forward, I hope the great research underway will produce better treatments and an eventual cure, so that generations to come won’t have to know about Multiple System Atrophy.”
