May is Nemaline Myopathy Awareness Month, a time for our community to come together, share our stories, and amplify our voices. This year, A Foundation Building Strength is thrilled to introduce an exciting new way for everyone – NM community members and the public alike – to get involved: The NM Awareness Share-A-Thon!
WHAT IS A SHARE-A-THON?
Think of it as a super-easy way to make a BIG impact with just a few clicks! The NM Awareness Share-A-Thon is a unique online event designed to spread awareness about Nemaline Myopathy far and wide while simultaneously raising crucial funds for research into much-needed treatments. Participation is easy, and you can contribute at whatever level feels right for you, from creating your own fundraising page to simply sharing our daily posts.
HERE’S HOW IT WORKS:
Throughout May, we’re inviting you to become a Share-A-Thon advocate! Here’s the timeline:
Beginning May 1: Create Your Fundraising Page! Head over to our dedicated Share-A-Thon website on 99Pledges. There, you can easily create your own personalized fundraising page by clicking on the “Add Participant” link. It will already have some basic information to get you started, but you can add your own photo and a personal message about why supporting NM research is important to you. This is where your friends, family, coworkers, and network can pledge a small amount (e.g., $0.05, $0.10, $0.25) for every share* of our special awareness posts during the Share-A-Thon week. Spread the word and collect donations!
* Individual pledge collection will be capped at 500 shares per pledger. So, even if a post goes viral, there’s a limit to their contribution. They can also choose to pledge a flat amount!
Monday, May 26th – Saturday, May 31st: Let the Sharing Begin! This is the main event! Each day, from Monday, May 26th, through Nemaline Myopathy Awareness Day on Saturday, May 31st, AFBS will share a special, Share-A-Thon branded NM Awareness post on Instagram and Facebook.
Your Mission (Should You Choose to Accept It!): Your job is simple! Once you see our daily Share-A-Thon post, share it with everyone you know and encourage them to do the same! The more it’s shared, the more awareness we generate!
Pledge Power: As you share, remind your network that there’s still time to make a pledge on your personal fundraising page until the end of the Share-A-Thon on Saturday, May 31st at midnight PST. Their small pledge per share can add up to make a significant difference for NM research.
Counting the Impact: At the end of the Share-A-Thon, the total number of times these special posts have been shared across the entire event will be tallied. The pledges collected through your individual page will then be processed automatically through the 99Pledges platform, directly supporting vital NM research.
WHY PARTICIPATE?
- Make an impact with the click of a button: You can make a real difference in raising understanding about Nemaline Myopathy with just a few clicks each day.
- Fueling Research: Every share, and every pledge, contributes directly to funding critical research projects aimed at finding effective treatments for NM.
- The Power of Community: By participating, you’ll be joining a collective effort to make our voices heard and show the strength of the NM community.
- It’s Engaging and Fun! Let’s create a tidal wave of awareness together!
FREQUENTLY ASKED QUESTIONS:
Early to Mid-May: Visit our Share-A-Thon page on 99Pledges and claim your free fundraising page. Personalize it with your story!
May 26th – May 31st: Keep an eye on the A Foundation Building Strength Instagram and Facebook pages for our daily Share-A-Thon post. Share it widely! Remind your network to pledge!
Friends and family pledge a small amount (e.g., $0.05, $0.10, $0.25) for every share of the designated Share-A-Thon posts during the event. They can also choose to pledge a flat amount!
Yes! To ensure peace of mind, individual pledge collection will be capped at 500 shares per pledger. So, even if a post goes viral, there’s a limit to their contribution.
All pledges will be securely collected through the 99Pledges platform at the end of the Share-A-Thon.
Absolutely not! We encourage everyone to join us in spreading awareness and supporting research. Share with your friends, family, colleagues – anyone who wants to make a difference!
LET’S MAKE AN IMPACT TOGETHER!
The NM Awareness Share-A-Thon is a fantastic opportunity to amplify our message and drive critical funding towards a brighter future for those living with Nemaline Myopathy. It’s easy, it’s impactful, and it’s a chance for all of us to share the strength of our community.
Keep an eye out for the announcement of the Share-A-Thon website launch in early May. We can’t wait to see the incredible impact we can make together!
For more information about A Foundation Building Strength and our ongoing work, please visit buildingstrength.org.