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MSA Awareness Blues

MSA Awareness Blues

Written by Larry Kellerman

Life has a way of defining us rather than vice versa. Each and every day there are innumerable interactions, any of which could have a different outcome. The goal is to be prepared whichever directions those interactions might take, which we all know is easier said than done.

Sometimes those interactions are job-related, but often they occur in our daily lives. These interactions might be positive; meeting a new friend or finding a new place to eat. Others, not so much; seeing an accident or encountering some environmental danger.

Which of the many interactions over time cause the brain of a future MSA patient to start producing or altering the alpha-synuclein being produced, thus causing the neurodegenerative disease multiple system atrophy?

[This is written for a blog post on the Coalition’s web page but is for any and all visitors who come for the first time. Please remember when reading these bulleted points there is a reason for this post; advocacy is an on-going process and each time may help bring one, maybe ten, into the advocacy fold]

  • It’s rare – 4 in 100,000 patients will be diagnosed with MSA, 8-9 in 100,000 for those above the ages 40-45.
  • It is sporadic – To this point no known cause, genetic or environmental, has been found; to this point it is not known to be hereditary
  • No treatment – there is not one treatment that has yet made it past Phase 3 status in the clinical trials process
  • No cure – Yep, that’s right! It is a d____ s________.
  • How to solve these problems – raise awareness of the disease and monies for the premier funding entity in the MSA community, the Multiple System Atrophy Coalition, and its research grant program.

Raising awareness is a tricky proposition and many advocates have tried multiple methods to bring attention to the disease and sometimes to raise money. There are marathoners, half-marathoners, runners, bicyclists, lemonade stand entrepreneurs, and many others. All help raise awareness and oftentimes money. People wanting to beat this Beast.

Two blues aficionados and one blues artist extraordinaire, offer the BEAT MSA! Fundraiser on October 3, 2019. My wife Colleen, who brainstormed with me this entertainment approach to fundraising, thought raising awareness was best accomplished when people are enjoying themselves. This event, held on World MSA Day, will bring together some of the best in local and national blues artists, good food (included in ticket price) and silent auction items from college basketball programs and blues artists. There will be bands playing, artists soloing, wonderful blues singers singing and guitarists playing. And we can’t forget the skins or the great bassists laying down the beat.

We want it to be an enjoyable and memorable night! Come join us or email me if you have any questions or want to help.

The pictures here show Colleen’s joy at crossing Walt Disney World off her bucket list; this trip in late December 2013 was just two months before our second fundraiser – but that’s another story.

Written by Larry Kellerman, MSA Coalition Board of Directors & Support Line Volunteer

Copy and Paste: The Easiest Fundraiser Ever

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!

Copy and Paste: The Easiest Fundraiser Ever

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 this week.

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, right now, we still have $60,000 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 twice-weekly until Jan 5, 2017)

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/holiday-hope-for-an-msa-cure-2016

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/holiday-hope-for-an-msa-cure-2016

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/holiday-hope-for-an-msa-cure-2016

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/holiday-hope-for-an-msa-cure-2016

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/holiday-hope-for-an-msa-cure-2016

Thank you!

Copy and Paste: The Easiest Fundraiser Ever

To my fellow children of MSA Warriors: You can still make a difference!

 

By Sarah Duffy-Clinton (In memory of Deb Duffy)

bitemeDeb Duffy suffered from Multiple System AtrophyWe watched our mothers and fathers courageously battle this unforgiving disease. We need to continue to courageously fight this disease in our loved ones honor; fight for funding to help researchers find answers and continue to support those who are impacted. And the best part of being a small army, is that every person can make a huge difference.

All children of MSA Warriors: Please create a fundraiser page NOW as part of the MSA Coalition’s Holiday Challenge Campaign, it takes just 5 minutes! Click “Fundraise for this Campaign” here:

fundraise-for-msa-button

Upload a few photos and write a short paragraph about your parent and their struggle. Then take a few minutes over the next 4 weeks to share the link to your page with your contacts on social media and in email. Every donation, no matter the amount, makes an impact. We need you to help continue the fight. Because, to quote my courageous mother who fought this disease with all that she had, “MSA can BITE ME!”

My mom was a kick ass fundraiser! She loved calling people and asking for money for a cause she was passionate about. Our passionate cause now is to help the MSA Coalition “Find a cure for MSA and help those currently struggling”. Now it’s our turn to give back to my mom… to countless moms and dads who have fought the good fight and to those who are now fighting – our MSA Warriors!

Mom fought this evil disease up to the end, refusing to give up hope that the doctors were only 80% certain that Multiple System Atrophy was the diagnosis (definitive diagnosis can only be made post mortem). She always said, “someone has to be in that 20% group, why not me.” While we all held out hope that she was right, unfortunately that was not the case. That is one of the hardest parts of this disease: the diagnosis. It can take years to diagnose, once all other potential diagnoses have been ruled out…and you can chase that diagnosis all over the world, but in the end, there is no treatment, no cure, nothing to slow down the progression…and this is where YOU come in.

The Multiple System Atrophy Coalition is LEADING THE FIGHT TO CURE MULTIPLE SYSTEM ATROPHY while providing COMPASSIONATE SUPPORT and INFORMATIVE RESOURCES to benefit families affected by this serious, progressively disabling, neurodegenerative disease.

Any amount helps fund research that could eventually lead to a treatment and ultimately a CURE!

And it wouldn’t be a Deb Duffy plea without this phrase:

“MSA CAN BITE ME”

Thank you for your support!!!!”

Click to Visit Sarah Duffy-Clinton’s Fundraiser Page

 

 

Copy and Paste: The Easiest Fundraiser Ever

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.