At the end of September, we conducted the second annual global virtual fundraiser to support SDS research. The theme this year was TWO MILLION STEPS CLOSER TO #CURESDS.
When? September 20st-26th, 2021
Where? Virtual! Run/Walk/Roll wherever you like!
What? Fun!!! Fundraise and Run/Walk/Roll in your community!
Why? To build community and raise funds for SDS research!
How? (Registration is now closed). Since you are here, you are likely already registered. Now just get hooked up to the leaderboard!
The vibrant blue T-shirts were hugely popular and were included for participants who registered by the cutoff date is August 29th, 2021. Will they become a collectible?!?
And just like that, it's a wrap. The conclusion of the 7-day long challenge: TWO MILLION STEPS CLOSER TO #CURESDS is worth celebrating. You stepped up big time and logged - drumroll please! - 3.6 MILLION STEPS! With your support, we have also exceeded the fundraising goal of $10,000 for this fundraiser.
This fundraiser pushed us over the milestone of reaching 70% of our funding goal for the Mouse Model Project. Since then, we reached 85%. Will you help us get to a 100%? Less than $25K to go. Together, we can get there. Let's turn hope into action, now. Learn more here.
Winner of the team challenge:
Winner of the individual challenge:
Here is what she shared with us:
"It was a pleasure to participate in the Two Million Step challenge with our Team at Frost Brown Todd and Al’s Pals. My husband and I were on a family vacation with my 2 sons, their wives, and our 8 grandchildren so putting in steps was not a challenge at all, it was a gift. Every step taken was a step of hope. Looking forward to participating for many years to come. All the best -- Cindy"
A personal diary by the founders
Ripple effect. We are turning HOPE into ACTION. Several SDS families have already joined us, from around the world. (You know who you are ). How many more families and organizations will step up to the plate? Together, we can make huge strides toward therapies and cures for Shwachman-Diamond Syndrome. Will you join us?
It's a balancing act. I mean life...as a rare disease parent. There is work, there is raising kids and making sure they get the best care possible, and then there is driving research to #CureSDS. Rare disease research faces specific challenges, most notably funding. In the current paradigm, we - the rare disease families - have to be the agents of change. Is it hard? Yes. Are we doing it anyway? Absolutely. We need to be proactive, fundraise, and be active participants in research. We have got what it takes: the right expertise, experience, vision, plan, and drive. Join us! Register or donate here.
Together we can. None of us could log TWO MILLION STEPS single-handedly, but together we will. There is still time to join, see below. We created the SDS Alliance to bring the whole global SDS community together to work towards our common goal of a brighter future for all SDS patients. We do this by driving research to #CureSDS, and invite all families, organizations, academics, and industry who want to help to join us. Register or donate here.
There is a path to #CureSDS. It may not be easy or straightforward, but with focus, determination, and purpose, we can get there. We are already TWO MILLION STEPS closer, thanks to all of you, turning HOPE into ACTION.
There is still time to join. Register or donate here.
It is all about the SDS patients: young, old, and everyone in between. What do we need to set in motion TODAY to create a brighter FUTURE for all SDS patients? That's what the SDS Alliance is focused on. See our roadmap below. With your contribution to the TWO MILLION STEPS CLOSER TO #CURESDS challenge, you are part of the solution. Thank you!
This challenge ends tomorrow night, but there is still time to join. Register or donate here.