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In honor of Rare Disease Day 2020, we asked our APBD community to #ShowYourStripes.  Scroll down to see their hopes and dreams for APBD research.  We also shared this impact graphic below to showcase our 15 years of progress.

In the rare disease world, the stripes imagery is often in reference to zebra stripes. There’s an old saying, used in teaching medical students to think about the most common or likely diagnosis first: “When you hear hoof beats, think of horses, not zebras.” That very logic, however, is the cause of many rare disease patients going extraordinarily long times with a misdiagnosis.

H & R’s Dream

February 29th, 2020|

"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

February 29th, 2020|

"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

February 29th, 2020|

"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

February 29th, 2020|

Volunteer and Family Member

Dave’s Dream

February 29th, 2020|

" I dream about APBD research that will find a cure for this debilitating condition!" - Dave

Chuck and Harriet’s Dream

February 29th, 2020|

"I dream about APBD research that makes my walking reliable."  -Chuck, with his wife, Harriet

Lori’s Hope

February 29th, 2020|

"I am very hopeful I will see a cure."  -Lori  

RZ’s Dream

February 29th, 2020|

"I dream about APBD research that finds a cure so that I and others can walk."  -RZ

Emil’s Dream

February 29th, 2020|

"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

Andrew’s Dream

February 29th, 2020|

"I dream that someday, sooner than later, a treatment and cure will be found. APBD has robbed me of what I was and how much I know I can be." - Andrew

Beth and Jeff’s Dream

February 29th, 2020|

"We dream of Jeff being able to walk unassisted! Let’s find a cure for APBD!" - Beth and Jeff

Penrod Ronson’s Dream

February 29th, 2020|

"I dream of APBD research that discovers both a cure & treatments to alleviate symptoms and also generate a broader awareness of this very rare -- and yet not the rarest -- of genetic disorders." -  Penrod Ronson with his [...]

Deberah’s Dream

February 29th, 2020|

"I dream about APBD research that finds a cure!" - Deberah

Sheila’s Dream

February 29th, 2020|

"I dream about APBD research that that finds a cure to help me walk "normally", function in daily activities "normally", be able to drive, with my brain functioning with stability..." - Sheila

KF

February 29th, 2020|

Kathi’s Hope

February 29th, 2020|

"I feel blessed to be living with all my support and love.  I am hoping gene therapy can help."