Here, at The MSA Coalition, we are proud to have a community of passionate members who are dedicated to doing whatever they can to support our mission and improve the lives of patients diagnosed with Multiple System Atrophy (MSA).
Because this disease is so rare, many people are not aware of MSA, including many healthcare professionals, making diagnosis and treatment a significant challenge. Despite these challenges, members of our community take the initiative to spread awareness of MSA and fundraise in support of education and research surrounding this disease. We consider these members as true champions of MSA.
Austin Urban is one of these champions.
Austin Urban, Miles for MSA
Austin is a real estate professional in New York state and is close with his parents Jon and Kim, who own and operate The Copake Country Club and Greens Restaurant in Craryville, NY. Austin is a fitness enthusiast who enjoys golfing, snowboarding, and other similar activities taking after his father Jon, who was a collegiate athlete back in the ‘80s and an avid runner of half and full marathons for most of his life.
Austin and his father Jon
It was the day after Thanksgiving in 2019, and the Urban family was cleaning up their home after a Thanksgiving celebration they hosted for extended family and friends. As evening approached, they decided to have dinner at their favorite restaurant across the street from their home. It wasn’t until they returned home that night that they received the news. Austin’s father Jon had been diagnosed with MSA.
Austin describes his father as the life of the party but also the hardest working guy in the room. Jon is always up before sunrise and stays at work long after everyone else has gone home for the day. He loves to host friends and family, always making sure others have an amazing time in his presence. In his over 35-year career, Jon has owned a variety of businesses and has employed over 1500 people. If you need a favor, Jon is always there to help, letting his friends and family tap into his resources for whatever is needed. If you had a fundraiser, Jon was always donating money or products to help you reach your goals and execute a perfect event.
Jon was 59 years old at the time of his diagnosis and had been experiencing symptoms for about a year and a half. Due to the rarity of the disease, he was misdiagnosed with a variety of different diseases just as many patients are who have MSA. The Urban family was left wondering what they were dealing with as doctors struggled to pinpoint the cause of Jon’s symptoms.
After the official diagnosis, Austin was able to connect with our organizational experts and resources to assist with any questions and concerns.
“The news was awful, but The MSA Coalition has helped many times and is right here when you have questions,” Austin shares.
Despite the diagnosis, Austin’s penchant for hard work and staying active would inspire his fundraising initiatives for the Coalition on behalf of his father. In the years since his father’s diagnosis, Austin has organized many charity runs raising over $100,000 for The MSA Coalition in support of patients and care partners impacted by MSA. In Austin’s first year of the run, he was the sole runner and raised $15,000. By the second year, he recruited 15 runners who raised $70,000 overall.
The Miles for MSA 100-mile running challenge occurs in May, where donations are made per mile ran. After every run, the total number of miles and donations are compiled, and the month ends with an open invite to the “Final Mile” party held on May 31st to celebrate runner and donor achievements.
In 2022, the Miles for MSA event will feature a new component, a 300-mile bike ride, allowing more people the opportunity to participate who are unable to run. If you are interested in joining the 2022 Miles for MSA charity run and bike ride, call, text, or email Austin Urban at 845-891-1770 or austinjurban@yahoo.com.
We are so thankful to have the support of Austin, his family, and his community. The impact he has made through Miles for MSA will go a long way in understanding, diagnosing, treating, and, one day, curing this disease.
Thank you, Austin Urban, and all the runners and donors of the Miles for MSA community!
Fundraising is the most important activity that any family affected by multiple system atrophy can do to help the cause. Unfortunately, fundraising can be intimidating and even scary.
But, it doesn’t have to be.
Every year the MSA Coalition benefits from simple and inexpensive fundraising activities. Here are four easy ideas that fellow members of the MSA community are already doing to help:
Four Simple Ways to Raise Money For Our Cause
1) Spare Change Collection
Jenna Dexter shared this idea with us:
“My dad, Richard Dexter, was diagnosed with MSA-C in November 2015. In 2017, our family and friends began to collect all the “change” we could find when we were out and about to fill up my dad’s change jar. My dad decided he would match all the change we added to his jar each year and donate the full amount to the MSA Coalition during the MSA Family Conference. This year we were able to donate $200 to the MSA Coalition. This is our family’s way to help contribute to all of the good work being done to help fight this rare neurodegenerative disorder that causes a multitude of symptoms such as impairments to balance, difficulty with movement, poor coordination, bladder dysfunction, sleep disturbances, and poor blood pressure control.“
Imagine how much we could raise if every family in the MSA community donated their spare change.
2) Shop Amazon Smile Instead of Amazon
If you are already shopping on Amazon, then why not switch to Amazon Smile? It is the exact same platform, with all the same deals and Amazon Prime free shipping.
The only difference?
With Amazon Smile you can select the Multiple System Atrophy Coalition as your charity to support. A small percentage of every purchase is donated to us by Amazon. In total, with very low participation, the MSA Coalition has already received more than $4,500 from Amazon.
Just be sure to go to Amazon Smile instead of Amazon. It is super easy and only requires you to keep shopping!
Imagine how much money we could get from Amazon if everybody that knows an MSA patient shopped on Amazon Smile? It’s a lot!!!!
Here is what Raymond “Bill” Werre says about Amazon Smile:
“Just for your information, there is a way to provide funds to The MSA Coalition without any cost to you. If you buy anything from Amazon go to https://smile.amazon.com/gp/clpf…
Then find The Multiple System Atrophy Coalition and select it for your donations. Anything you buy from Smile.amazon.com will result in a donation to the MSA Coalition (including medical supplies like adult diapers). I don’t buy much from Amazon, BUT I have provided $5.48 this year as a result, 1000 like me would be $5480 and 10000 like me would be $54,800.“
3) In Lieu of Gifts
This idea is perfect for the holidays, birthdays, anniversaries and more. Host a party and ask for donations to the MSA Coalition instead of gifts.
Use the MSA Coalition’s GoFundMe platform to easily create a personalized In Lieu Of Gifts fundraiser. It is a great place to tell your story, share pictures and a video and it comes with your own personal URL. Now all you have to do is invite people to your party and share the link for them to make donations instead of bringing a gift.
4) Self-Sacrifice For The Cause
What activity is an indulgence that we could do without? Is it a cup of coffee at the cafe? A movie at the theatre? Dinner out? Others?
To support the cause give up an indulgence for a day, week or month and donate the difference to the MSA Coalition. Challenge your friends and family to do the same.
Hope for multiple system atrophy (MSA) patients has traditionally been tough to come by. From the 1960s, when MSA was first diagnosed (then known as Shy-Drager Syndrome (SDS)) through 2010, progress in understanding the cause and funds for critical research were limited. This is not to say progress was not made. Several research centers with autonomic disorder specialization and scientific organizations like the American Autonomic Society worked diligently conducting research to find the cause, develop diagnostic and symptom treatment protocols, and to test potential therapies. This work now serves as a strong foundational building block.
A New Era of Hope for Multiple System Atrophy
In 2011 the nonprofit SDS/MSA Support Group, which was first established in 1989, made the decision to expand its vision from solely supporting patients and caregivers to a 4-pillar mission which included emotional support for the MSA community, patient and physician education, advocacy and awareness, and encouragement and funding of the most promising multiple system atrophy research. Under the leadership of Don Crouse, Vera James, and Judy Biedenharn, and with the council of Drs. David Robertson and Tom Chelimsky, the organization changed its name to The Multiple System Atrophy Coalition® and embarked on building the premier national charity with world-wide reach for all affected by MSA.
Rebuilding a charity was not an easy task! It took countless hours by a very small group of dedicated volunteers to think through the changes and then implement them. Within a year major progress was made and continues:
Established the MSA Research Grant Program with dedicated funds and a world-class Scientific Advisory Board (SAB) in charge of vetting all research proposals received by The MSA Coalition.
Expanding the quality and reach of our Annual Patient and Family Conference, which now exceeds 175 in-person attendees and is live streamed globally to over 3,000 more viewers
Began expansion of the Board of Directors from five members to fifteen, broadening the range of skills and talents to support our mission.
By the end of 2011 the initial changes were complete and progress was being made. In the years prior to 2012 the charity raised an average of $10,000 to $25,000 per year. Beginning in 2011 with the announcement the new 4-pillar mission donations began to increase.
2012 $54,500
2013: $206,800
2014: $498,100
2015: $1,020,000
2016: $862,700
2017: $939,100
This increase in revenue has given The MSA Coalition the ability to begin making a real difference on behalf of those suffering from MSA. The biggest reason for hope in the eyes of many patients is research. Without research treatments and a cure will never be found. Over the past 4 years the MSA Coalition has funded 36 research grants from around the world totaling $1.6 million. Each and every grant has been scored and vetted by the SAB and many guest reviewers. If there is a potential conflict the reviewer recuses themselves from scoring and discussing that particular project. After the grants are scored and ranked The MSA Coalition Board of Directors reviews and votes to fund the top research grant applications. Where possible, connections on similar proposals are made in an effort to encourage collaborations among researchers and institutions. This process means that only the most promising research is funded by The MSA Coalition. As such, a diverse range of studies have been funded from 25 institutions and 30 researchers in 9 different countries. “Being good stewards of the money raised at the grass-roots level is always at the forefront of every financial decision we make. The MSA Coalition is extremely proud of its transparent and non-biased research grant process,” said Carol Langer, Treasurer of the MSA Coalition.
Other hidden benefits of the MSA Coalition’s research grant program that are bringing new optimism to multiple system atrophy research, include:
These grants often help fund the work of young investigators meaning they choose to focus their research on MSA rather than other areas.
Through the diligent work of Pam Bower, The MSA Coalition’s research committee chair, several global collaborations on important research have been started.
The infusion of grass-roots donated research dollars has provided all MSA researchers with new energy and optimism about finding better diagnostic markers, treatments, and potential cures.
In addition to funding research the MSA Coalition is also leading the push for better global collaboration and data sharing, which will speed the process of improving patients quality of life. In the past few years, The MSA Coalition has provided sponsorship funds for multiple research meetings including primary sponsorship of the past two International MSA Congresses, and MSA specific sessions at both the American and European Autonomic Society Scientific Meetings. These meetings are critical for researchers from around the world.
Fostering Collaboration
To further streamline use of resources The MSA Coalition encourages other advocacy organizations, foundations, and large donors to utilize and participate in its established research grant program. Due to the rare nature of MSA there are a limited number of researchers and potential grant applicants. As such, The MSA Coalition desires to share its SAB and grant application process to ensure that research funds from as many MSA charities as possible are being used in the most efficient manner and that researcher time and efforts are not being wasted on duplicative processes and work. Charities and foundations participating in the MSA Coalition research grant process are included as observers in the SAB review process, and can choose to fund the highly scored research proposals that meet their individual criteria for funding. It is an open and transparent review and voting process for all funders. These charities, Foundations, and Individuals have contributed substantially to past MSA Coalition grant programs: MSA Trust, Cure PSP, MSA NJ, Move Over MSA, the Rex Griswold Foundation, Patrick Costigan, and the Blandford-Rees Foundation.
To continue building hope for multiple system atrophy, The MSA Coalition is now leading an effort to unite multiple system atrophy charities in a collaborative consortium. On March 1-2, 2018, The MSA Coalition hosted the first ever MSA Global Advocacy Meeting in New York City in conjunction with the 6th International MSA Congress. The meeting, led by Cyndi Roemer, Chair of The MSA Coalition, featured lecturers by the National Organization for Rare Disorders (NORD) on how to build a consortium and by the Michael J Fox Foundation on their research grant program. The meeting also offered breakout sessions on various topics from advocacy, education and support, research, and fundraising. It concluded with sharing of learnings and new ideas and with plans to build a consortium of global cooperation among MSA advocacy organizations.
The past 5 years truly mark the beginning of an era of hope for those suffering from multiple system atrophy. The MSA Coalition promises to continue its transparent, mission driven work to build collaboration among advocates and researchers with the ultimate goal of delivering more than just hope. The desire is to shift from an era of hope to a new era of results that deliver improved and earlier diagnosis, both symptomatic and disease modifying treatments and ultimately a cure to eradicate MSA from the Earth!
Real hope for multiple system atrophy patients is in reach! Support our efforts by fundraising for the MSA cause. We are united to defeat MSA!
How do you think we are doing? Let us know in the comments section!
To help inspire your Multiple System Atrophy fundraising efforts this Holiday season, the MSA Coalition has compiled a list of very practical fundraising tips that make it easy and simple to be successful!
Important Dates to Know:
The Crowdrise Holiday Challenge runs from Nov. 28, 2017 – Jan. 3, 2018.
November 28, 2017 is #GivingTuesday (The most important giving day of the year!)
Step 1: Set Up Your 2017 Holiday Hope for a Cure Fundraising Page
Click on the above link and select the purple button that states “Join The Team & Create Your Own Fundraiser.”
Create a Crowdrise account or sign in to your existing account (if you have donated or raised money on Crowdrise before.)
Click the purple “Join the Team” button in the pop up field.
Go to your email inbox where you will get an email from Crowdrise. Read their three tips and click on the orange “START CROWDRISING” button.
Agree to the terms. You will now be on your own personal MSA Coalition Holiday Hope for a Cure fundraising portal.
Step 2: Personalize Your “Holiday Hope for a Cure” Crowdrise Page
Customize your page. We highly recommend customizing your page. If you don’t edit your page the default is the MSA Coalition’s content from our master Holiday Hope for A Cure page, It is good, but your personal story will have more impact with your network.
Near the top of your Crowdrise portal select “Edit Fundraiser”
Upload pictures that help show your MSA story.
If you have a video that tells your MSA story add a YouTube or Vimeo URL link so people can view your video.
Set a realistic and achievable goal for the amount you want to raise.
For most fundraisers $500 to $1,000 is very reasonable and achievable. Our average fundraiser in past CrowdRise Holiday Challenges raised $1,600 – but, most of our fundraisers have raised under $1,000. Even if you only raise $100 or less your efforts will be appreciated!
Tell your personal MSA story with as much emotion and passion as possible. Upload your own pictures and be sure they appear first when your page is opened. If you include a short video to tell your story this is even better! Not only will your story help you raise money, but it will also spread awareness about Multiple System Atrophy. It shouldn’t take more than 5-10 minutes to get set up.
View your finished fundraising page. On the left side of your portal you will see a navigation option – “View.” Click on the link and you will be taken to your actual page.
Review your finished page. If you spot any typos or want to make changes you can go back to your portal and go to edits. If you are happy with your page, you have one last step before you share it with your contacts….
Be the first person to donate to your own fundraiser. If you don’t donate to your own fundraiser can you really expect your contacts to donate? Donate, even if it’s just $10 and don’t share your fundraiser page until your donation is posted.
Don’t start fundraising until #GivingTuesday
Put a note in your calendar as a reminder for November 28, 2017.
Start your day on November 28 by posting your fundraiser on Facebook and sending your fundraising URL to everybody you know via email.
Send an email reminder 2-3 times during the day on #GivingTuesday.
Step 3: Share! Share! Share! Start Raising Money
At the bottom of your live fundraising page you will see sharing buttons for Facebook and Twitter. There is also a “Share” button where you will find the URL link to your fundraising page.
The three easiest ways to spread the word and ask for donations are:
EMAIL your personal fundraiser page link with a personal note to everyone in your contact list.
SHARE your personal fundraiser link on all of your social media accounts, especially Facebook, Twitter, and LinkedIn.
The knock-it-out-of-the-park tactic: Call your best contacts and talk to them about your fundraiser and ask them for a donation. Follow up the call with a personal thank you email that includes the link to your fundraiser.
Be sure to ask everybody you know to contribute and be sure they know the story as to why you are fundraising. Emotion and passion will move your contacts to action.
Family
Friends
Neighbors
Church members
Social groups
Work colleagues
Classmates
And more!
Be Persistent! Ask more than one time, or even two times. Just because your email went unanswered doesn’t mean your friends aren’t interested in helping. The holidays are a busy time of the year and people are swamped with all those emails about holiday deals. Send an email each week making the ask for a donation to help keep your fundraiser top of mind. Post it to your social pages every few days. Your friends will appreciate the reminders.
Don’t fundraise alone. Recruit your family members and closest friends to spread the word about your fundraiser to their contacts.
Host a Holiday fundraiser party. In lieu of hostess gifts or wine ask your guests for a donation to your fundraiser. Remember to include your fundraiser information in the invitation. You can also have a laptop out with your fundraising page open.
6. Be sure to let everyone know their tax-deductible gift will be matched dollar for dollar until we surpass our matching gift pledges. (The final matching pledge total will be available on the MSA Coalition’s 2017 Holiday Hope for a Cure Crowdrise page.)
Watch this 20 minute prerecorded webinar on why and how to raise money for the Multiple System Atrophy Coalition. The webinar includes easy step by step directions on setting up a fundraiser and offers practical tips to make your campaign a great success.
Jenna Dexter shared this idea with us:
To continue building hope for multiple system atrophy, The MSA Coalition is now leading an effort to unite multiple system atrophy charities in a collaborative consortium. On March 1-2, 2018, The MSA Coalition hosted the first ever MSA Global Advocacy Meeting in New York City in conjunction with the 6th International MSA Congress. The meeting, led by Cyndi Roemer, Chair of The MSA Coalition, featured lecturers by the National Organization for Rare Disorders (NORD) on how to build a consortium and by the Michael J Fox Foundation on their research grant program. The meeting also offered breakout sessions on various topics from advocacy, education and support, research, and fundraising. It concluded with sharing of learnings and new ideas and with plans to build a consortium of global cooperation among MSA advocacy organizations.
