PKU: Living in a Cave
PKU: Living in a Cave Guest Blogger: Kevin Alexander, MA I have lived my entire life being afraid. I have always minimized PKU when talking to others about it, at least until a few months ago. In my desire to fit in with society I simply downplayed its role in my life. [...]
FOR IMMEDIATE RELEASE – HR 5651, the Food and Drug Administration Reform Act of 2012
FOR IMMEDIATE RELEASE House FDA User Fee Bill Will Unlock Lifesaving Treatments for Rare Diseases Rare Disease Community Applauds House Energy & Commerce Committee for User Fee Reauthorization Legislation that Spurs the Development of Treatments Thursday, May 10, 2012, WASHINGTON, DC—– Today the House Energy & Commerce Committee finished mark-up of HR 5651, the “Food and [...]
Erythropoietic Protoporphyria – EEP Does Not Define Me
Patient Stories of Hope and Inspiration ‘Meet Renae!’ I was symptomatic with Erythropoietic Protoporphyria (EEP) as an infant, diagnosed by a dermatologist at age 12, and have been coping with EPP for 43 years. I will attest to EEP being a nuisance, inconvenience, and painful reminder that I cope with during the warmer months [...]
Our Angel with Langerhans Cell Histiocytosis
Patient Stories of Hope and Inspiration ‘Meet Aamari’ Aamari Braijon Culbreath, was born on May 4, 2008, with lesions from head to foot. After spending 10 days in the NICU, he was released home with a diagnosis of Langerhans Cell Histiocytosis (LCH) of the skin. During the next two months, Aamari visited the emergency room [...]
Michelle Obama’s Video Challenge: Vote for Prader-Willi Syndrome and Rare Disease
Taking Rare Disease To the White House The Foundation for Prader-Willi Research (FPWR) and the Prader-Willi Syndrome Association (PWSAUSA) have entered a video into Michelle Obama’s video challenge to fight childhood obesity. You can view their video submission and help to spread the word about rare disease by casting your VOTE (everyday) at “Take One SMALL [...]
Rare Pictures of Hope™ – Submit Your Hope Photo Today!
When one of our parent advocates re-posted a picture she found with our slogan, “Hope. It’s in My Genes!” we never imagined it would have the effect that it did. There have been more than 700 photos posted to Facebook since last week! Each and every picture touches a string in our hearts and we [...]
Ataxia-telangiectasia: Giving Hope
Patient Stories of Hope and Inspiration ‘Meet Cayenne’ My niece Cayenne has A-T (Ataxia-telangiectasia), a rare childhood, progressive and degenerative disease that affects a variety of the body’s systems. After a year of testing, Cayenne was finally diagnosed when she was almost three. Her main symptom of A-T was her wobbly walk – she was [...]
PKU: Time To Live
Time To Live Guest Blogger: Kevin Alexander, MA Editor’s Note: Kevin Alexander has Phenylketonuria (PKU), a rare inherited metabolic disorder. Kevin shares with us his vision for a blog: One vision that I have for my blog is for it to be a place where I can just be real with you. It’s all too [...]
‘Rock the Cure’: Rocking Out for Dravet Syndrome and Eosinophilic Esophagitis
Bands will ‘Rock the Cure’ this weekend by Kelli Easterling Richmond County Daily Journal Rockingham, NC – Reported on April 10, 2012 Local contemporary Christian bands have joined forces to “Rock the Cure” this Saturday, while “rocking out” on two stages in the Winn Dixie parking lot in Rockingham from 11 a.m until 4 p.m. “There [...]
Rickshaw Run 2012: Cool Runnings for Sanfilippo Syndrome
On March 22, R.A.R.E. Project announced the amazing endeavors of Joe and Paul, two adventurists who planned to participate in the RickShaw Run to support Sanfilippo Syndrome with R.A.R.E. Project as their charity of choice. On April 6 - Joe and Paul, a.k.a. team Cool Runnings, began their adventures in India to fight for the [...]