At BFLS Inc, we are dedicated to advancing research for this incredibly rare but devastating condition, Börjeson-Forssman-Lehmann Syndrome (BFLS). Every person battling this diagnosis faces unique challenges. And so often, because of the lack of understanding, insufficient awareness, and limited treatments, they are not living their lives to the fullest potential despite their and their families’ best efforts.
We as a nonprofit want to strengthen our relationships with families to join forces and grow as an organization to further research for this genetic condition. Along with our fundraising initiatives, we are actively recruiting BFLS patients and their families to participate in our Natural History Survey to describe their experiences with BFLS. Every contribution of knowledge a family makes about living with BFLS helps to guide our research in the right direction.
By starting a fundraising campaign in your local community or workplace to rally support and raise funds, you help bring awareness to this rare disease and the urgent need for research in this field. Your donation can pave the way for groundbreaking research initiatives and innovative treatments that have the potential to transform lives.
Together, we can make a difference. Your involvement is crucial in our journey towards a future where no BFLS patient or their family has to live without hope for a better future.
To learn more about our organization and other ways you can help, visit us at www.bflsinc.com.
Thanks,
Kearstyn Shaw
Founder & President | BFLS Inc.
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