Fighting ABCA3 Surfactant Deficiency Since Day One – Meet Brayden

Brayden_ABCA3_-Surfactant_Deficiency-

My name is Amanda Havens and my son Brayden Matheu Pearson was born with a rare genetic disease.  He was born with ABCA3 surfactant deficiency and most do not know about this disease.  He does not produce the surfactant in his lungs to transport the […]

Spooner Family Searches For Diagnosis For Daughters Rare Disease

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Rick and Cristyn Spooner of Rancho Santa Margarita have fostered a dynamic husband and wife team both as business partners and in raising three beautiful children. Despite achieving success in operating their loan company, the Spooner’s have faced greater challenges and discovered even greater meaning […]

RARE Disease Lobby Day

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WHEN:          February 28, 2012 WHERE:        Washington, DC WHO:           RDLA RDLA (Rare Disease Legislative Advocates) is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and ViroPharma to ensure that rare […]

Kylie McPeak’s Story – Living Life with an Undiagnosed Rare Disease

Regina.McPeak

Our daughter Kylie was perfectly healthy until three days before her 4th birthday – April 2008. She had a sudden seizure. From that moment on our lives changed drastically. After her first seizure, she developed a strange twitch by her mouth which then turned into a “tremor.”  […]

Nager Syndrome – Peyton’s Smiling Face Brings So Much Joy To Others

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Peyton isn’t that much different than any other four year old if you ask her.  She loves to color and dance and she is a ‘Yo Gabba Gabba’ fanatic.  Luckily, she is still blissfully unaware of the stares directed her way when we go to […]

Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome

Team_SanFilippo_Foundation

Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome (RARE Project – Dana Point, CA) Rare Disease affects 350 million people worldwide, consisting of 7,000+ identified diseases and disorders.  Currently less than 5% of all rare diseases have any […]

Sempra Energy and Kids Helping Kids Volunteers Supporting Global Genes Project

Kyle and Jackson Watkins, with Lynn Watkins and Lisa Hubbard of Sempra Energy Supporting Global Genes Project

Sempra Energy Foundation and Southern California rare disease advocates work to raise awareness and volunteer for the Global Genes Project, a RARE Project initiative. Family and friends gathered together to help make denim ribbons in support of the Global Genes Project’s efforts to support those […]