February 28 is Rare Disease Day 2018

February 28 is Rare Disease Day 2018

Rare Disease Day 2018

Did you know multiple system atrophy (MSA) is one of approximately 7,000 known rare diseases? Additionally, about 80% of MSA patients have a secondary rare disease, neurogenic orthostatic hypotension (nOH), which is low blood pressure upon standing. While only 13,000 Americans or so have been diagnosed with MSA at any given time, 30 million Americans or 10% of the U.S. population suffer from these often misdiagnosed and often poorly understood conditions. Of course, the numbers are much bigger when the entire world is included.

According to the National Organization for Rare Disorders (NORD), “People with rare diseases have tremendous unmet needs, including misdiagnosis, a long time to finally receive a correct diagnosis, and when they do, 95% have no treatment with ZERO CURES.”

Does NORD’s statement ring true for your process of being diagnosed with MSA?

We often hear that it takes as many as 4-5 years for those with MSA to be accurately diagnosed. Often, a diagnosis of Parkinson’s disease is first made, but it progresses much faster than PD and prescribed treatments are less effective.

Were you first diagnosed with PD?

How long did your MSA diagnosis take from first symptoms?

If you are frustrated with how long your diagnosis took or a lack of treatments and a cure for MSA, then Rare Disease Day is for you. Rare Disease Day offers the opportunity for all those affected to band together, millions strong, to raise awareness. On this day, the MSA community with thousands of affected families can amplify our voices and make a difference. Whether it’s explaining to your network what it is like to suffer from a little-known disorder or writing to your representatives in Congress asking for more research, you can make a difference. Together. with the other 7,000 rare diseases, the noise will make a difference. But… you need to participate!

What will you do on Rare Disease Day today to help raise awareness for MSA, nOH, and rare disorders as a whole?

“Rare Disease Day® takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives.” As a person with or affected by multiple system atrophy, it is critical that your voice be heard. So, whether you are a patient or have a loved one with MSA, it is time to speak up. Share your story on your Facebook page and be sure to tag both the MSA Coalition and NORD. We also encourage you to visit NORD’s Rare Disease Day website and to use their various tools to raise awareness for MSA and all rare diseases.

Awareness tip: When advocating, don’t just say MSA, instead say or spell out multiple system atrophy.

Rare Disease Day 2018: The Importance of Funding and Research

Rare Disease Day 2018: The Importance of Funding and Research

Rare diseases are a daily battle for some 30 million Americans. One in 10 people in the country are fighting an illness that is shrouded in mystery. The only way to alleviate the unknown – and the burden felt by patients- is through increased research.

Patients with rare diseases have tremendous unmet needs, including but not limited to misdiagnosis. It is common for patients to wait years for an accurate diagnosis, roughly 4.8 years. Unfortunately, even after receiving an accurate diagnosis, 95 percent of rare diseases have no treatment options or cures. The purpose of Rare Disease Day is to increase awareness within the general public, and decision makers, to improve options for those suffering.

Rare Disease Day is celebrated in February each year. The month, rare for it’s odd number of days, is the perfect time to highlight the roughly 7,000 rare diseases. Rare diseases, like multiple system atrophy and mesothelioma cancer, affect only a limited number of people which often leads to less funding allocation. Diseases that impact a greater portion of the general public are more likely to receive funding because there is a greater profit margin.

Limited funds impact the medications, treatment options, and clinical trials available to patients. The prevalence of a disease should not dictate the level of care a patient receives or how greatly the out of pocket costs are felt.

According to a survey conducted by the Rare Disease Impact Report of both the United States and United Kingdom payers – those who finance healthcare within a country’s health system – treatment for a rare disease is relatively more expensive and costs are rising quickly compared to more common diseases. For example, the estimated annual cost for a patient with Hemophilia, a rare blood disorder, is $131,111. Over a lifetime that equates to 8.7 million dollars.

Funding allocation is complicated for rare diseases due to segmentation – each rare disease is unique and requires specialized attention. Eighty percent of rare diseases have identified genetic origins, others are the result of infections, allergies and environmental causes, or are degenerative and proliferative.

The key to advancements for all the Americans suffering from a rare disease is collaboration between researchers and the ability to have cross over medication and treatments. Keytruda, a drug originally used for advanced stage melanoma, is a an example of what is possible if funding is dedicated to enabling necessary research. The medication has been proven a viable treatment for pleural mesothelioma. Keytruda was an effective therapy in approximately 76 percent of the treated pleural mesothelioma patients, which represents a promising result and an improvement in prognosis. Among the 25 patients who received Keytruda, 28 percent had some shrinkage of tumors, while 48 percent of the treated patients experienced stable disease or no increase in extent of tumors.

A similar outcome for multiple system atrophy would be life changing for the about 14,000 people living with MSA in the U.S. There is currently no specific course of treatment for those with MSA – patients are often treated with medication created for Parkinson’s disease. Unfortunately that medication is not very effective – in many cases there is no response.

It is hoped that through the use of the orphan drugs a more specific treatment approach can be achieved. In 2016 there was $450 billion in drug spending – 60 percent of that was non-orphan traditional drugs, one third on non-orphan specialty medication and only 7.9 percent of the spending was on approved orphan drugs.

As scientific advancements are continually achieved it is expected that the number of recognized rare diseases will grow – as the number of diseases increases so does the necessity of precision medicine through the use of orphan drugs.

In an effort to raise funds and awareness the National Organization of Rare Disorders (NORD) is hosting a 7,000 mile rare movement. The campaign challenges advocates to join together and seek pledges to walk, run, or bike 7,000 miles collectively throughout the month of February. For those with multiple system atrophy and patients with all types of rare diseases research funding cannot come soon enough. On February 28 #ShowYourRare to show you care!

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!

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.)
Giving Tuesday – A Critical Day for Multiple System Atrophy Research

Giving Tuesday – A Critical Day for Multiple System Atrophy Research

If you want to have the biggest impact possible in the quest to find better diagnostic tools, treatments and hopefully a cure for multiple system atrophy #GivingTuesday (November 28, 2017) is the most important day of the year!

100% of every dollar raised, matched, and won on #GivingTuesday will go directly into the MSA Coalition Research Grant Program! If you help us fundraise the total could reach $200,000 or more!

Don’t stay on the sidelines during this critical day!

Read on to learn more….

History of Giving Tuesday

#GivingTuesday has been celebrated each year since 2012, on the first Tuesday after Thanksgiving (in the U.S.). It symbolizes the start of the Holiday giving season, which for most charities represents the time of the year when the biggest portion of their donations are received. The MSA Coalition has participated each year through its partnership with the CrowdRise Holiday Challenge. Last year the MSA Coalition raised more than 10% of its total revenue for the year on #GivingTuesday.

The CrowdRise Holiday Challenge, A Great Event For MSA

This year’s CrowdRise Holiday Challenge runs from November 21 – January 3, 2018. It is being

The Multiple System Atrophy Coalition's 2017 Holiday Hope for a Cure fundraiser on Crowdrise

Join The MSA COalition’s 2017 Holiday Hope For A Cure Team

sponsored by the Newman’s Own Foundation and is offering $500,000 in prize money to the top charities. The winner of the 6-week challenge will receive $150,000 and the top 10 causes will receive prize money. There are also bonus prizes throughout the Challenge with another $100,000 being distributed. Plus, there are separate prizes for #GivingTuesday totaling another $100,000. The top 3 causes will receive grand prizes.

Who wants to see a significant portion of these awards coming into the MSA Coalition for research, education and awareness initiatives?

If you are saying “Me! Me! Me!” read on…

Why the MSA Coalition Needs You on Giving Tuesday

We all know multiple system atrophy is a very rare and little known disease. Because of this it is very difficult to motivate outsiders to give to the MSA cause, let alone to fundraise. Grass roots, at least for now, is our single most effective way to raise money. That means, we need YOU to participate.

Last year (2016), the MSA Coalition had 100 families actively participate in the CrowdRise Holiday Challenge. On Giving Tuesday we raised just over $90,000, which was good enough for third place for the day. Unfortunately, two other charities did better and the Coalition did not win any of the prize money for the day. On the bright side, The MSA Coalition maintained its third place status throughout the CrowdRise Holiday Challenge and in the end secured the Third Place prize of $25,000 which was added on to the Challenge total of over $300,000 raised for MSA.

That’s right, with just 100 families participating the MSA Coalition raised over $300,000 dollars in 6 weeks and added another $25,000 in prize money to that total. Imagine what we could do if 200 families participated! What about 300, 400 or even 500! This is why we need you!

1: Sign Up to Help Us Raise and Win Money This Holiday Season

Joining our team is easy and will only take a few minutes

MSA Coalition 2017 Holiday Hope For A Cure Team Members

2017 Holiday Hope for a Cure Team Members

Join the MSA Coalition’s 2017 Holiday Hope for a Cure Team

2: Like and Follow The MSA Coalition’s Facebook Page for Volunteers

Don’t fundraise alone! Become a part of the MSA Coalition team of fundraising volunteers. We

Diane & Elaine Offer Hope & Advocacy for those with MSA

will post lots of great tips, updates and key dates to help make your fundraiser a success! Likewise, share your ideas, questions and success stories to help the whole team become better!

Like The MSA Coalition Volunteers Facebook Page

3: Sign Up for Special Giving Tuesday Newsletters

  • How to Set Up a CrowdRise Holiday Challenge Fundraiser
  • Tips on Fundraising Easily and Successfully
  • Success Stories From Other MSA fundraisers
  • Alerts About Key Fundraising Dates and Bonus Challenges
  • Fundraising Updates

If you are on the fence or nervous about fundraising, sign up for our newsletter and select the Holiday Challenge under fundraising as an interest. It is not a commitment to fundraise, it is only a commitment to learn more!

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