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.

12 Days 12 Ways

12 Days 12 Ways

12 More Days until the end of our Holiday Hope Campaign! Here are 12 Ways to Give to The Multiple System Atrophy Coalition this Holiday Season!

With the end of our Holiday Hope for MSA Campaign fast approaching, the MSA Coalition is within striking range of raising over $1 million overall in fiscal year 2018. The $1 million mark is very important to achieve as it will enable us to be officially monitored by Charity Navigator and will open up more opportunities to receive grants from other private and government organizations.

Below are 12 ways you can help the MSA Coalition achieve this major financial milestone which will allow us to better pursue our mission of improving quality of life while building hope for those living with MSA.

1. Donate on CROWDRISE! Remember All Crowdrise Donations will be MATCHED! https://www.crowdrise.com/holiday-hope-4-msa

Go a step further and Join the Team to Create your own Crowdrise Awareness and Fundraising Page! EMAIL the link to all your friends and ask for their support. Easily track who gives to your page and followup with thanks.

2. Donate on FACEBOOK! https://www.fb.com/fund/MultipleSystemAtrophyCoalition

Go a step further and Start your own Facebook Fundraiser! Click the blue INVITE button individually for everyone in your Facebook friends list and SHARE, SHARE, SHARE!

3. Donate on the MSA Coalition’s WEBSITE! Add a tribute to a loved one, designate your gift to research, education or where the need is greatest: https://www.multiplesystematrophy.org/donate-now

4. Donate with a CHECK or MONEY ORDER! Make it payable to: MSA Coalition, 7918 Jones Branch Drive, Suite 300, McLean, VA 22102

5. Donate to the MSA Coalition PAYPAL GIVING FUND! PayPal will add 1% to your gift and there are no fees! https://www.paypal.com/fundraiser/charity/74271

6. Donate via the COMBINED FEDERAL CAMPAIGN! Federal employees and retirees, please note our CFC number is 42606.

7. Donate STOCK or Donate by BANK WIRE TRANSFER! Just email our treasurer for assistance with these options. clanger@msacoalition.org or phone 866-737-4999

8. Arrange Now to LEAVE A LEGACY! Remember the MSA Coalition in your will: https://www.multiplesystematrophy.org/fundraising/planned-giving

9. Donate your USED CAR! https://www.multiplesystematrophy.org/fundraising/car-donation/

10. Send a HOLIDAY GREETING CARD!

https://www.justgiving.com/givecards/charity/us/2069234

11. Send or Post a PURPLE HEART in tribute to your loved one at the MSA Coalition Wall of Love. https://www.givinggrid.com/ajketo/

12. Post a PHOTO of your loved one at the MSA Coalition Angels and Warriors Page. https://www.givinggrid.com/tmxovc/

How MSA has affected me and my family – and why I am fundraising for the MSA Coalition

How MSA has affected me and my family – and why I am fundraising for the MSA Coalition

By Guest Blogger Suzy O’Dwyer

I don’t really remember how it all started. I think my mom was pretty good at hiding her weakness, a trait I’ve inherited from her. But I’ll never forget the phone call: “Suzy, there’s something wrong with me.”

I brushed it off, “I’m sure it’s nothing mom.” I think were my exact words.

Because all those things that happen to other parents don’t happen to mine. My family, while nowhere near perfect, was as pretty close as you get. Lucy O'Dwyer's Mother had Multiple System Atrophy

Two parents, married for 30+ years, with a girl and a boy. Besides the small stint when my brother was a rebellious teenager, we are as pretty easy going as they come.

That all changed.

It took another year after that first phone call for my mom to officially be diagnosed with MSA. When you learn about MSA and hear stories of people who have been through this disease, that story is not uncommon. It took many frustrating doctors visits, many invasive tests, many fruitless treatments to finally find out what this disease wasn’t.

Oddly enough, my parents chose to tell us her diagnosis on Thanksgiving day. Sitting around the dinner table, we read the fact sheet on MSA. I skipped to the end and read the one word you never want to read: terminal. In fact, from the onset of symptoms, most people with MSA don’t even live past 9 years.

How has MSA affected my family? In every single way possible.

It took my mom and my very best friend. It robbed my son’s future memories with his “memaw”. It removed my dad’s wife and anchor. My husband, sister-in-law, brother, aunts, niece, all have a different life today because of MSA.

The O'Dwyer Family was Impacted by Multiple System AtrophyI fundraise because nobody should ever have to see their loved one go through the nightmare that is MSA. My mom lived for 2 years past that first phone call. Those years were filled with a steady decline that was impossible to watch.

The MSA Coalition has been a light in the tunnel for us. Seeing loved ones and relatives of our own come together and support my mom financially was uplifting last year. I think people find that with this disease, in particular, there aren’t a lot of ways you can support people. Fundraising gives people the chance to walk alongside you. I would encourage you, speak out about your journey. I know I’ll be fundraising every year until there’s a cure.

6 Tips to Fundraise for MSA

6 Tips to Fundraise for MSA

With “6 Tips to Fundraise for MSA” you can become an important member of the cause! The Multiple System Atrophy Coalition has made great strides to create an era of hope for those suffering from multiple system atrophy. With hopes to foster collaboration within our community, the MSA Coalition encourages its supporters to advocate for those with MSA. As our organization expands in skills, research, and impact, we are looking to the MSA community to participate in and organize live fundraiser events. Everybody in the MSA community needs to become a fundraiser. It is by far the most realistic way multiple system atrophy will receive the funding it needs to achieve major breakthroughs in diagnosis, treatment, and outcomes.

We have created 6 tips to fundraise for MSA and listed them below. Getting started on your own fundraiser for MSA is the most impactful way you can help the cause. Together, we can make a difference as we work to provide real hope for those with multiple system atrophy.

1. Choose An Event Format or Theme

By hosting a fundraiser for MSA, we are hoping to inspire awareness and participation. In order to encourage action at these events, creativity is key! A unique and entertaining event theme will

The Williams Family at their Fundraiser to Fight MSA. They use several of our 6 tips to fundraise for MSA

The Williams Family at their MSA Fundraiser

boost registrations and strengthen impact for MSA! First consider your target audience. Who do you want to invite to your fundraiser? Would your demographic be more inclined to support a 5K race, fashion show, or benefit dinner?

Land on an event theme that you feel will build excitement. Here’s a few ideas to get you started.

  • Golf Tournament: Find a local golf course and request that they donate a few less popular hours to your cause. Athletic events are a great way to get your supporters outside and create a little friendly competition!
  • Pancake Breakfast: Who wouldn’t support MSA when there’s food available? Ask a few volunteers to assist in the preparation and cooking, and ensure that there are options for everyone — vegan, gluten-free, and sugar-free foods included!
  • Carnival: Invest in whatever you feel is appropriate. Carousels are fun, but homemade booths and costumes make for a more personalized event experience.

Need more inspiration? Here’s a list of fundraiser ideas you can use.

2. Establish a Budget

Managing your event’s budget isn’t easy. Perhaps the most important factor is starting the budgeting process early and giving yourself ample time to research potential costs. Put together a rough estimate of the capital you have to work with, but make sure to leave room for unexpected expenses. These will almost always arise, and you want to ensure you’re covered in an emergency.

Research is crucial! Shop around and get multiple quotes before selecting a vendor. Even if you have found your perfect vendor, they may be willing to price match if you can find something cheaper. As new quotes come in, be sure to update your budget sheet.

Document everything– create an Excel Spreadsheet or Google Sheet from the very beginning. When creating a budget document, be sure to include all income or expenses, no matter how small. Small purchases can easily creep up and control more of your budget than you might think. We recommend using formulas in your spreadsheet, which will minimize any errors in you budget.

This family used all 6 tips to fundraise for MSA3. Choose a Venue

When selecting a venue for your event, try looking beyond your typical event halls or convention centers. Some of the most exciting fundraisers take place at alternative event spaces, like barns, rooftop gardens, or airport hangars. Think creatively, but make sure to ask keep in mind, budget, attendee capacity, discounts, and package (what’s included in the price).

4. Find a Ticketing or Registration Platform

Once you have finalized all the planning details, give your attendees an easy way to register and order tickets. A nonprofit registration platform makes it easy for your potential attendees to pay online and share your event with others. In addition, it is simple to manage donations, ticketing, and marketing.

5. Market Your Event

When tickets are available, it’s time to spread the word and generate excitement for your fundraiser! Create an event on Facebook that you can share on other social media platforms. Followers of your charity can learn more about your event, and share with friends and family. As word spreads, so will MSA awareness. Be sure to include all the details as well as the registration page! Create flyers to gain local attention and be sure to distribute them widely. Free online graphic design websites make it easy to design custom posters without the hassle of software programs.

6. Follow Up and Review

After your event, sit down and determine the pros and cons of your event. What worked and what didn’t? Noting things that you can fix will make it that much easier to plan your next fundraiser.

One of the easiest ways to generate feedback is through attendee response. Create a short online survey and email it to those who attended your event. A useful survey is short, sent out quickly, and limited to multiple choice questions. Keeping these factors in mind will produce useful data on your event.

For more information on setting up an MSA Fundraising Event: Visit here!

Please let us know what you think of our blog “6 Tips to Fundraise for MSA” in the comments below! We also encourage you to share your own tips and ideas for fundraising.

6 Tips to Fundraise for MSA

Copy and Paste: The Easiest Fundraiser Ever

Is setting up a fundraiser intimidating, confusing, or to time consuming?

Well, now you don’t have to set up anything to help us fundraise. All you need to do is copy, paste and send. That’s right. Copy, paste, and send. Further down in this blog post you will see five prewritten asks. All you need to do is pick the one that fits you best, paste it into your email and social pages, (customize it a tad if you want), and send. Keep reading to see why your help is so important and for a few more details about this super easy fundraiser.

We need at least 100 MSA families that have not yet raised money to Copy, Paste, and Send to their contacts

If Multiple System Atrophy has impacted you or a loved one, we need you as a fundraiser. We simply can’t hit our goals of finding treatments and a cure without every MSA family chipping in. MSA is too rare to expect anybody but our own community and network to care.

Plus, today only, we still have $150,000 in matching gift pledges to earn. That’s right, every dollar your network donates will be matched dollar-for-dollar. We can’t let that money go unclaimed. So, please help!

You and YOUR NETWORK can make a big difference!!

So, we have made it super easy to fundraise. You don’t even need to set up your own fundraising page. You can use the MSA Coalition’s Group fundraiser page!

All you need to do is copy and paste the page link into a group email and into a Facebook post along with our prewritten asks.

Here they are:

Multiple System Atrophy Fundraising Copy and Paste Asks:

(Copy one of the 5 “ask” choices below, Paste it in Email and Social, Customize with names, Send and Post, Repeat 3-times on Giving Tuesday and then twice-weekly until Jan 3, 2018)

1) For MSA Patients:

Dear family and friends

As you may know, I am battling a rare disease called Multiple System Atrophy. Very few people have heard of it, so research to find treatments and a cure is terribly underfunded. Therefore, it is up to patients like me to create awareness and to fundraise.

This Holiday season, I would very much appreciate a donation on my behalf to the Multiple System Atrophy Coalition. The MSA Coalition is a 501c3 dedicated to finding a cure and right now your tax-deductible donation to the link below will be matched dollar-for-dollar by a generous matching pledge.

Please click on the orange Donate button on this page: https://www.crowdrise.com/o/en/campaign/msa-coalition-holiday-giving-2017

Thank you!

2) For the Spouse of a Current MSA Patient:

Dear family and friends

As you may know, my {husband/wife} is battling a rare disease called Multiple System Atrophy. Very few people have heard of it, so research to find treatments and a cure is terribly underfunded. Therefore, it is up to patients like me to create awareness and to fundraise.

This Holiday season, I would very much appreciate a donation in honor of {NAME} to the Multiple System Atrophy Coalition. The MSA Coalition is a 501c3 dedicated to finding a cure and right now your tax-deductible donation to the link below will be matched dollar-for-dollar by a generous matching pledge.

Please click on the orange Donate button on this page: https://www.crowdrise.com/o/en/campaign/msa-coalition-holiday-giving-2017

Thank you!

3) For The Child of an MSA Patient

Dear family and friends

As you may know, my {father/mother} is battling a rare disease called Multiple System Atrophy. Very few people have heard of it, so research to find treatments and a cure is terribly underfunded. Therefore, it is up to patients like me to create awareness and to fundraise.

This Holiday season, I would very much appreciate a donation in honor of {NAME} to the Multiple System Atrophy Coalition. The MSA Coalition is a 501c3 dedicated to finding a cure and right now your tax-deductible donation to the link below will be matched dollar-for-dollar by a generous matching pledge.

Please click on the orange Donate button on this page: https://www.crowdrise.com/o/en/campaign/msa-coalition-holiday-giving-2017

Thank you!

4) For The Friend of an MSA Patient

Dear family and friends

As you may know, my dear friend {fNAME} is battling a rare disease called Multiple System Atrophy. Very few people have heard of it, so research to find treatments and a cure is terribly underfunded. Therefore, it is up to patients like me to create awareness and to fundraise.

This Holiday season, I would very much appreciate a donation in honor of {NAME} to the Multiple System Atrophy Coalition. The MSA Coalition is a 501c3 dedicated to finding a cure and right now your tax-deductible donation to the link below will be matched dollar-for-dollar by a generous matching pledge.

Please click on the orange Donate button on this page: https://www.crowdrise.com/o/en/campaign/msa-coalition-holiday-giving-2017

Thank you!

5) In Memory of a Deceased MSA Patient

Dear family and friends

As you may know, my {spouse/father/mother/brother/sister/friend}, {NAME} passed away from a rare disease called Multiple System Atrophy. Very few people have heard of it, so research to find treatments and a cure is terribly underfunded. Therefore, it is up to patients like me to create awareness and to fundraise.

This Holiday season, I would very much appreciate a donation in memory of {NAME} to the Multiple System Atrophy Coalition. The MSA Coalition is a 501c3 dedicated to finding a cure and right now your tax-deductible donation to the link below will be matched dollar-for-dollar by a generous matching pledge.

Please click on the orange Donate button on this page: https://www.crowdrise.com/o/en/campaign/msa-coalition-holiday-giving-2017

Thank you!