09/21/2024
Announcing the BBS 100K Challenge!
What does it mean to be rare?
While definitions vary, a useful and easy to understand definition of a “rare disease” is that it affects less than 1 in 2000 people. For example, about 1 in 10 women develop breast cancer, 1 in 20 people have heart disease, 1 in 100 have celiac disease, and 1 in 1000 have multiple sclerosis. Cystic Fibrosis is one of the most well known rare diseases–it affects about 1 in 4000 people. Hemophilia affects about 1 in 20,000 people, while Huntington’s Disease affects 1 in 50,000.
BBS is what we call “ultra rare”. That’s because it affects approximately 1 in 100,000 people. In other words it’s 50 times more rare than the threshold for being a rare disease.
When confronted with a rare disease–dealing with family members, teachers, service providers and even doctors who say “I’ve never heard of that”–it can be tempting to think about raising awareness. It’s important to have resources to educate people and to be able to find informed, quality care, but general “raising awareness” of something so rare isn’t likely to help. There are 10 times more nephrologists in the United States than there are people with BBS. In other words, even though kidney disease is a common symptom of BBS, 95% of nephrologists are never going to see a BBS patient.
What does matter is making sure that every family affected by this ultra syndrome gets diagnosed as early as possible, gets access to accurate and up-to-date information, and can find the 5% of specialists that do know about BBS.
The BBS 100K Challenge
To make sure that happens, we’ve decided to lean into how rare and unique BBS is. We may not be 1 in a million, but we’re scientifically proven to be 1 in 100,000.
We’re asking everyone in the community to take part in the 100K challenge: together we’re going to 100,000 miles to raise $100,000 dollars to make sure that every family gets an accurate diagnosis early, that every family has access to quality information, that every person affected by BBS has access to quality, informed care.
Putting on a fundraiser can be a lot of work–especially for a family that is coping with everything that goes along with having an ultra-rare disease.
So we’re making participating in the BBS 100K challenge easy: all you have to do is create a page as part of the BBS 100K challenge, decide how far you’re going to go (walk, run, bike, swim, rollerskate, whatever is right for you) to accelerate progress for people affected by BBS.
Then, and this is important, invite people to support you in your journey to a better future for everyone affected by BBS. They can pledge a specific amount, or an amount per mile based on your goals.
This isn’t a one day event (though you can certainly have a 1 day event yourself). The idea is that over the next 90 days, we’re all going to go some extra miles to support each other and everyone in the BBS community. You can walk 1 mile a day for 90 days; or bike 5 miles every weekend the next 3 months; or do a combination of things with family and friends. What you do and when you do it don’t matter–going 100,000 miles for the BBS community together is our goal. After each time you get out to move, you can update your page to show how far you’ve gone.
You can find the BBS 100K challenge here: https://go.rallyup.com/bbs100kchallengehome/Campaign/Details Just click on the button to “sign up”.
We have lots of resources to help you set up an individual page, or a “Team page” so that everyone in your family can participate together.
If you have any questions, reach out to us on the Foundation page or [email protected].
I can’t wait to see how far we can go as a community!
