The Multiple System Atrophy Coalition Is Set to Complete a Banner 2015

The Multiple System Atrophy Coalition Is Set to Complete a Banner 2015

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).

The Multiple System Atrophy Coalition Is Set to Complete a Banner 2015

To All of Us

A Guest Blog Post By MSA Patient, Dan Gallivan

To All of Us,

The MSA Coalition and some 75 Individuals have done an outstanding job of collecting $106,000 in donations from family, friends, and co-workers. The $106k will be matched through the generosity of two families.

There is a problem, we are leaving $46k on the table and with the match it becomes $92k.

Dan-gallivanI was sitting in the quiet today, not feeling well and was thinking about the $46k our group needs to collect in order to get the whole match. As an individual I don’t know how to come up with $46,000. I was only able to collect $2900 in donations. I have not stopped, I am trying to do more.

Folks we cannot afford to leave this much money on the table. We need it for research. If not for us, then for the folks that come after us. But I prefer it be for us.

What came into mind was this statement “Just Ask”.

“Just Ask” for the donation. So as a “Group” if we just ask our friends, relatives, ex co-workers, a few wealthy individuals, we may be able to close the gap on the $46k.

So here is the plan of attack, each one of us will “Just Ask” for a $500 donation. Don’t be shy, “Just Ask” we need to be successful with only 92 donors to hit the $46k mark. Out of all of us that are reliant on the MSA Coalition I suspect there are more than 92 of us. So all of us need to “Just Ask” until we have 92, $500 donors, or, 115 donors donating $400 each, or 153 donors donating $300 each, or 230 donors donating $200 each or 460 donors donating $100 each. From there it is 614 @ $75, 920 @$50 and 1840 @$25. Or a combination of all of the 7 groups.

We can do this. We have until January 7th 2016 to get it done. Let’s help our friends at the MSA Coalition reach 100% of the match. Besides it all benefits us. So we need to get this done. We need the research dollars.

Now, I am praying hard that I do not offend anyone. It is not my intent.

Please listen, we are the experts, who else is better equipped to explain to a donor what their donation means to us. We are living this nightmare. What it also means, is a trained staff, ongoing research, support groups, reading materials, professional speakers, conferences bringing doctors and researchers together, linking the UK and Japan with us. We need this money, let’s go out and “Just Ask” for the donation.
If you do not have an account set up you can use my CrowdRise account; just click on the link below: : https://www.crowdrise.com/MultipleSystemAtrophyCoalition/fundraiser/danielgallivan.

Please accept my apology if I have offended anyone.

God Bless Us all;

Dan Gallivan

PS: For more ideas on how to fundraise see these MSA blog posts:

The Multiple System Atrophy Coalition Is Set to Complete a Banner 2015

How We Raised $15,000 to Fight Multiple System Atrophy

A Guest Blog Post By Sundee Lewis

“Probably our biggest mistake was to not set our fundraising goal high enough. As first time fundraisers, we thought we could realistically bring in $2000. We were pleasantly surprised when we far surpassed that number.”

Our father was diagnosed with MSA a year and a half ago and all of us (my mother, my 3 sisters and their husbands, my teenage brother and myself and husband) were all heart-broken by the news. Our father was a very active, healthy, successful 57-year old. He was a man who water skied, snow skied and ran half marathons not a man that was going to lose his ability to walk, talk and function. Needless to say, we were devastated.

After our initial reaction, research and realization that we could do nothing for our father medically, we made the decision that we needed to do something. We decided that because of our father’s love for running we would organize a small fun run to support the Multiple System Atrophy Coalition. That “small” fun run turned out to be an amazing event that as one participant posted on face book said, “A great event this morning to honor a saint of a man and to increase awareness of the disease that has become the cause of his family and friends. We love you Williams family!!”

So how did we succeed?

To be honest a lot of it had to do with faith, answers to prayers, hard work and networking.

Brainstorm and plan

We began in July of this year to talk to other people who had done fundraisers to get ideas of what steps we might need to take (like getting a permit from the city to have the race and getting event insurance.) We also talked to the high school varsity football team to see if they would be involved and they gave us the suggestion of putting together an obstacle course and getting sponsors for each obstacle.

Advertise

Once we settled on the format of the fundraiser we began advertising by making a face book page, putting together a website and using twitter to spread the word.

We also created an informational flyer about our event (with participation and event registration details) and received brochures about multiple system atrophy from the MSA Coalition. We had friends hand deliver the flyers and brochures to people in our neighborhood and church community and then we placed them in local gyms and doctors’ offices. My sisters set up tables at the varsity football games to get people registered for the event.

While we developed our own event website, if you don’t have the expertise you can set up an online fundraising events for the MSA Coalition on CrowdRise to coincide with your event. You can also help fundraise for the MSA Coalition during the CrowdRise Holiday Challenge (December 1, 2015 – January 7, 2016).

Get businesses to sponsor your event

Another blessing was working with my brother-in-law’s employer Ameriben. This company of 600 employees took up our cause and encouraged it’s employees to participate, donate and volunteer for our event in addition to donating $2000 from the company. So, all of us began asking friends and families who owned businesses (insurance agents, dentists, doctors, CPA’s, financial planners, real estate agents, essential oil manufacturers) to sponsor our obstacles. We were amazed by the response and how willing people were to donate $500-$1000 each.

We also reached out to our church community and local neighborhood.

Network, Network, Network

All of us worked hard to share what was going on through social media and emailing our friends and family. We were blessed to have that information forwarded to others through our friends/family. Our mom, who has been a water aerobics instructor for twenty years at the local YMCA, sent an email to all of her water aerobics friends, which totaled over 300 people and included the governor of Idaho’s wife.

Our teenage brother was interviewed on the local news as a member of his high school’s football team and talked about the event. We invited all of the other high schools in the area to bring their football teams to compete in the obstacle course and to donate $250. Four schools brought their teams and we raised another $1000 that way.

Be passionate and fearless!!!

Of course there are many more details of how we actually pulled off this event, but in the end it comes down to the fact that all of us passionately promoted our cause. We are firm believers in raising awareness and money to fight this disease that has changed our world and are not afraid to ask any and everyone to help us in this cause.

A huge success

Probably our biggest mistake was to not set our fundraising goal high enough. As first time fundraisers, we thought we could realistically bring in $2000. We were pleasantly surprised when we far surpassed that number.

In the end we raised over $15,000 with $8000 from corporate donations, $4000 from individual donations and the remaining money from our 400 participants.

Make it an annual event

We plan to do this annually and hope to see it grow, but even if we just raise $2000 next year, we know that we are making a difference in the fight to raise awareness and find a cure for Multiple System Atrophy.

We are so grateful for the generosity of the people of Boise and our dear friends and family all over the United States.

Food and Medical Tent

Food and Medical Tent

Good Friends Enjoying the MSA Fundraiser

Good Friends Enjoying the MSA Fundraiser

The Race to Move Over MSA Begins

The Race to Move Over MSA Begins

The Starting Line

The Starting Line

MSA Patient Gives High Fives to Fundraising Participants That Finished the Race

High Fives For Race Finishers

A race to fundraise for the multiple system atrophy coalition

Good Friends Walk the Race Course

The Williams Family at their Fundraiser to Fight MSA

The Williams Family at the MSA Fundraiser

Football Teams Participating in a Multiple System Atrophy fundraiser

The Participating Football Teams