Dr. Or Kakhlon Presents APBD Research Update at the 2020 RARE Drug Development Symposium
Or Kakhlon, PhD -- one of our research grant recipients -- working at Hadassah Medical Organization presented his APBD research findings at the 2020 Global Genes RARE Drug Development Symposium. The RARE Drug Development Symposium, organized by Global Genes in [Read More]
University of Florida’s Professor Qing Lu Joins the Foundation’s Scientific Advisory Board
We are pleased to have Professor Qing Lu join our Scientific Advisory Board. Qing Lu, PhD is a Professor of Biostatistics at the University of Florida. Professor Lu completed his undergraduate training in Applied Mathematics & Industrial Foreign Trade from [Read More]
What Does Walking Across the GW Bridge Have to do with APBD Research?
By Harriet Saxe, APBD RF Board of Directors June 18, 2020 Dr. Orhan Akman receives Foundation support to study APBD In a recent conversation with Orhan Akman, PhD -- one of our research grant [Read More]
Thank you for making #ShowYourStripes a great success this year in honor of Rare Disease Day!
Thank you for making #ShowYourStripes a great success this year in honor of Rare Disease Day! This past week, our APBD community did #ShowYourStripes and more than 12 people shared a quote about their hopes and dreams for APBD research [Read More]
COVID-19 Resources
A list of resources, information and activities. Click on the text of any of the items listed to go to the website. Government Resources: CDC (Center for Disease Control) WHO (World Health Organization) Rare Disease Organizations Resources: Global Genes NORD [Read More]
Exciting Announcement for the APBD Community
Dear Patient Community, Family Members, Cheerleaders, Donors, Researchers and Clinicians: Today is a special day. We have important news to share with you. We are excited to announce that we are one of 30 recipients of a $450,000, two-year Rare [Read More]
H & R’s Dream
"I dream about APBD research that repairs my cells so that I can walk, have energy to play with my grandkids and sleep at night without pain." - H & R
Jim’s Dreams
"I dream that APBD could be identified sooner, as I was treated for MS for 20 years. I dream that more recommendations or treatments could be identified to stop or reverse this disease!" -Jim
FR’s Dream
"I dream about APBD research that one day we will have a cure and no one else will have to suffer the way my family has." - FR
Art
Volunteer and Family Member
Dave’s Dream
" I dream about APBD research that will find a cure for this debilitating condition!" - Dave
Chuck and Harriet’s Dream
"I dream about APBD research that makes my walking reliable." -Chuck, with his wife, Harriet
Lori’s Hope
"I am very hopeful I will see a cure." -Lori
Friends of the community
Friends showing their support for APBD community by wearing stripes!
RZ’s Dream
"I dream about APBD research that finds a cure so that I and others can walk." -RZ
Friends of the community
Friends showing their support for APBD community by wearing stripes!
Emil’s Dream
"I am confident that with the support of so many great and caring people, cure for APBD is just around the corner. Let’s not slow down this great momentum! Let’s make APBD patients' dream a reality!" - Emil