Every Penny Counts

Every Penny Counts

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.

Donate your spare change to the multiple system atrophy coalition

Building Hope for Multiple System Atrophy

Building Hope for Multiple System Atrophy

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:

  • Officially changed the name to The MSA Coalition®
  • Built a new website (MultipleSystemAtrophy.org) with a focus on educational content such as MSA – what You Need to Know
  • 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.

MSA Global Advocacy Meeting Hosted by MSA Coalition March 2018To 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!


MSA Holiday Hope for a Cure Fundraising Tips

MSA Holiday Hope for a Cure Fundraising Tips

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

  1. Sign up or log in to Crowdrise to create your new “2017 Holiday Hope for a Cure” fundraising page on the MSA Coalition Crowdrise team. To set up your fundraising page:
  2. Click on the above link and select the purple button that states “Join The Team & Create Your Own Fundraiser.”
  3. Create a Crowdrise account or sign in to your existing account (if you have donated or raised money on Crowdrise before.)
  4. Click the purple “Join the Team” button in the pop up field.
  5. 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.
  6. 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

  1. 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.
  2. Near the top of your Crowdrise portal select “Edit Fundraiser”
  3. Upload pictures that help show your MSA story.
  4. If you have a video that tells your MSA story add a YouTube or Vimeo URL link so people can view your video.
  5. Set a realistic and achievable goal for the amount you want to raise.
    1. 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!
  6. 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.
  7. 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.
    1. 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….
  8. 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.
  9. Don’t start fundraising until #GivingTuesday
    1. Put a note in your calendar as a reminder for November 28, 2017.
    2. Start your day on November 28 by posting your fundraiser on Facebook and sending your fundraising URL to everybody you know via email.
    3. 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.

  1. The three easiest ways to spread the word and ask for donations are:
    1. EMAIL your personal fundraiser page link with a personal note to everyone in your contact list.
    2. SHARE your personal fundraiser link on all of your social media accounts, especially Facebook, Twitter, and LinkedIn.
    3. 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.
  2. 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.
    1. Family
    2. Friends
    3. Neighbors
    4. Church members
    5. Social groups
    6. Work colleagues
    7. Classmates
    8. And more!
  3. 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.
  4. Don’t fundraise alone. Recruit your family members and closest friends to spread the word about your fundraiser to their contacts.
  5. 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. 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.)
Fundraising 101

Fundraising 101

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.

Fundraising 101

The Multiple System Atrophy Coalition® Launches Its MSA Can’t Take Campaign on Giving Tuesday

Program addresses the things MSA can’t take from those affected and drives awareness for importance of donations

Charlotte, N.C. – December 1, 2015: The Multiple System Atrophy Coalition has announced the launch of its MSA Can’t Take campaign to drive awareness and funds for Multiple System Atrophy (MSA) research, timed today to coincide with Giving Tuesday 2015, a global day of fundraising. MSA Can't Take the love I have for my familyy

Multiple System Atrophy 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 program 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. Additionally:

  • With earlier diagnosis, MSA won’t take away as much meaningful time for love, hope and laughter with family and friends. The earlier patients know, the more years they have to focus on enjoying what they can still do, especially during the early, less disabling stages.
  • With more effective treatments, MSA won’t take so soon a patient’s abilities to control movement and balance, drive a car, remain employed and continue so many other things we take for granted.
  • When we reach a cure, MSA will no longer be able to take everyone who develops Multiple System Atrophy to a premature end – as is unfortunately the case today.

“We’re excited to launch our MSA Can’t Take campaign to recognize the strength of those affected by the disease and the importance of donations to support MSA research,” said Don Crouse, Vice Chairman of the Multiple System Atrophy Coalition. “As we enter the holiday giving season, we’re urging those who know about MSA to consider giving a gift this year and informing others about the contributions they’re making. We’re encouraging patients will get involved, too, by answering the question: ‘What is something MSA can’t take from you?’ They should then post their replies in video, photo or text on social on the MSA Coalition Facebook page using #MSACantTake.”

The MSA Coalition invites patients, family members, friends and co-workers to support the MSA Can’t Take campaign and contribute to the fight against Multiple System Atrophy. To support the cause, interested parties can start a crowdfunding effort via CrowdRise and spread the word on social media using the hashtag, #MSACantTake.

For more information, please visit https://www.multiplesystematrophy.org/fundraising/msa-cant-take.