by admin | Feb 27, 2017 | MSA-Blog
Guest Blogger: Anna Suarez, Communications Specialist | MAAC
Rare Disease Day has arrived! On the last day in February the rare disease community can come together to raise awareness and share some common struggles and hopes for the future.
Why do rare diseases matter?
When considering the group as a whole, the rare disease community in America totals 30 million people, which is more people than those that have HIV, heart disease, or stroke. Despite impacting a large group of people, rare diseases don’t often get the attention they need and deserve. With over 7,000 unique rare diseases, the community is normally broken up into distinct categories or by specific disease. This is why when we’re given the opportunity to work together, everyone from the rare disease community should get involved however they can!
One of the common struggles for those with rare diseases is that they are misdiagnosed or even remain undiagnosed. Even after diagnosis, people with rare diseases face many challenges. They don’t have the widespread recognition or support resources that are available for more common illnesses. A lack of treatment options is another issue, but there is some hope on the horizon. In 2015, 47% of all new drugs approved by the FDA were designated specifically for rare diseases. One great example of this is the immunotherapy drug keytruda that has been approved for the treatment of melanoma, non-small cell lung cancer, and now is being studied as a possible treatment for a rare cancer called mesothelioma. These new drugs and treatment options are a breath of fresh air, especially when you consider that 95% of rare diseases don’t have FDA approved treatment options, and even for the remaining the 5% treatments are largely inaccessible due to high costs. Because rare diseases often have few options for treatment options along with the aggressive nature of some rare diseases, which often results in a poor prognosis for patients. Hopefully the development of better treatments will lead to longer life expectancy and improved quality of life. New drugs and treatment options can be a beacon of hope for patients battling these diseases.
But it’s not just medical advancements that can bring hope to patients. Even having a holiday where patients can be recognized at a national level and feel a part of the larger community can have a huge impact on morale. Rare Disease Day helps show patients that they haven’t been forgotten and reminds them that there are people out there who can share in their experiences and offer support.
What can we do to help raise awareness?
Since Rare Disease Day is so essential for our community, it’s important to talk about how to get involved! Awareness holidays can really to help bring more attention to issues facing the rare disease community and to show patients that they are not alone.
Being able to raise awareness is what this holiday is all about, and one of the best ways to do this is through social media! Oh February 28th you can tell your story online and include “#RareDiseaseDay” to join the campaign. Sharing how rare diseases have affected your life, or the life of someone you care about, adds a personal touch that you don’t get from sharing data and statistics alone.
And of course staying involved even after Rare Disease Day has passed is important as well. Volunteering is a great way to get involved and support an organization you care about. Continuing to share on social media, blog posts, or in your everyday life can all help advocate for rare diseases as well. You can also stay politically engaged and talk to your representatives about federal funding for development of better treatments. All of these activities have a real impact and can help support patients.
Rare Disease Day is one of the few occasions each year when these conditions are given the attention they deserve. Let’s celebrate it properly and help raise awareness for our community!
by admin | Dec 13, 2016 | MSA-Blog
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!
by admin | Dec 12, 2016 | MSA-Blog
Authored by Dan Gallivan, an MSA patient and active fundraiser.
I assume that the vast majority of people who like the MSA Coalition Facebook page did so because they have multiple system atrophy, or a spouse, caregiver, family member or close friend of someone with MSA or someone who has passed from MSA. As such, this truth, this appeal is for your contemplation and hopefully action.
Before I dig into my appeal let me first thank everybody who has ever shared an MSA post on social media, donated, and especially those who have done a fundraiser. Anything you do to support the cause is so greatly appreciated. The only way MSA will ever be defeated is if everybody affected by it creates awareness and raises money.
Individual donations, are of course, very important; however, setting up a fundraiser and asking your family and friends to contribute can multiply you impact by 10 or 20 times. Imagine if you donate $50. That is great, right? But then imagine if 20 people you know also donate $50. If 50% of the U.S. MSA community did this annually we would raise $6.5 million for research each year.
It is so doable!
We just need every MSA family to participate. With every MSA family fundraising it is not unrealistic to think that this next decade could deliver treatments to slow or halt MSA progression, or even see the identification of a cure. Without mass fundraising participation….
Unfortunately, for whatever reasons, way to few affected by MSA participates in fundraising activities. With only 13,000 Americans having MSA at any given time a one or two percent participation rate (130-230 active fundraisers) means the search for a cure is destined to be a long one, perhaps many decades or longer.
Don’t you want to defeat MSA, even if it is for a future generation?
I am telling you it is really easy to fundraise. Sure, it might be outside your comfort zone to ask family, friends, colleagues, and other to donate. But let me ask you this…. Isn’t it outside your comfort zone to be battling MSA as a patient, a caregiver, family member, or as a close friend. Wouldn’t you do anything to have a cure?
Well, as a rare disease that the vast majority of Americans and people around the world have never heard of, we the MSA community can only depend on ourselves to create the awareness and the funds to ultimately defeat MSA.
So here it is, the painful truth.
If you are impacted by multiple system atrophy and you don’t fundraise, your complaints about a lack of treatments and a lack of a cure will go unanswered.
And here is the emphatic appeal.
Please, please, please set up an online fundraiser and then email and socially share it with your network. All you need to do is click on the Blue “Fundraise for this Campaign” button to get started.
