We are going to be walking in order to raise funds and help accelerate research for BBS, a rare genetic disease. I hope to raise awareness and help the BBS Foundation make progress in finding a cure!
The reason I am fundraising is that I was born with BBS gene mutation. I was diagnosed when I was 8. I feel so connected with people who suffer from BBS because my BBS diagnosis was very sudden and rare!
My parents were so heartbroken, they didn’t know much at the time about how I would be able to go on with my life. I was in denial for many years. When I was diagnosed in Poland I didn’t know much about the genetic disease; I was terrified that I would be obese and I was terrified that I would have to deal with kidney disease. It was overwhelmed with all the potential symptoms. The most difficult part of the BBS diagnosis was coming to terms with a life changing unknown rare gene mutation. I didn’t know how to cope with my vision loss. I was depressed and I was anxious. I didn’t know anyone who could emotionally support me or how to thrive with a BBS diagnosis. I moved to Norway to obtain better resources, and completed high school in Norway.
On the first ever BBS Global Day, I am joining families around the world to taking action to build awareness for BBS research and support!
Host Information: Marta Magdalena Hanyzkiewicz
The purpose of this walkathon is to bring awareness that BBS isn’t a tragedy, is a challenge to overcome. As a life coach I empower my clients with BBS to thrive in their lives despite their BBS diagnosis.
I’m challenging my family and friends to walk for at least 10 minutes on BBS Global Day, and consider making a donation below in support of BBS. Walk on your own, whenever your time would permit throughout the day.
