Cure Rare Disease Families

Welcome to CRD Families

The Cure Rare Disease community is comprised of individuals and families who are impacted by rare disease and who are striving to change the outcome of a diagnosis. We know that a rare disease diagnosis can be one of the most difficult experiences imaginable, and we are here for you to navigate through that diagnosis and beyond.

We invite you to explore the CRD Families page to see how you can meet others within the community and engage with Cure Rare Disease in a way that benefits your loved one and the greater community. Interested in joining? Contact us below:

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Community

Meet Our Community

The Krieger Family

We are the Krieger Family from Phoenix AZ. My name is Sarah, my husband is Bryant, and we have 4 kiddos; Hans (7), Otto (6), Fritz (4), Ingrid (18mo). I am a former elementary teacher, who now homeschools our kiddos.

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The Klassen Family

We are the Klassens, Lee’s and Jeremiahs. We live in MD, CO, and VA. “pop-pop (dad), Greg (me) , Jeff (son), Michelle (daughter) and DeeAnn (sister) have all been diagnosed with Spinocerebellar ataxia #3.

The Hamilton Family

Rick, Nancy, Kalel (7) and Livvy (2) Hamilton from Ahwahnee, California

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The Bryan Family

Beau & JeanAnn Bryan with sons Sawyer (8) & Wesley (6) reside in Tea, South Dakota just outside of Sioux Falls. Both both have a duplication of Exon 44. Faith, Love & Hope guide our actions to a brighter future.

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Braydens Mighty Journey

We are the Juarez Family of 4, from Bastrop, Texas! Jaiden, our daughter aged 14, and Brayden, son, 9 with Duchenne M.D. We like movies, swimming, traveling, and just being together as a family at home!

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We Will for William

Kati, Joe and William (2) living in the Pacific Northwest. Newly diagnosed family in Feb 2020. We enjoy our family time, the outdoors, and house projects.

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The Sharp Family

We are The Sharp Family from Colorado. Carole, Bob, Ian (27), and Ty (25). Ian was diagnosed with BMD on Dec. 5, 2003. We have a small nonprofit and have raised over 1 million dollars supporting research.

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The Cabrera Family

Monica Cabrera single mom of Jose (JJ) and Andrew (AJ) Cabrera. Moved to AZ from California 17 yrs ago. Both boys born in AZ in 2011 and 2017. JJ was diagnosed with DMD on 4/1/19 and his brother shortly after

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The Andrews Family

Chase Andrews, big brother to Cassidy and Cara, son to Chad and Amy Andrews. Fruit growers in St. Thomas, Pennsylvania.

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The Harvey Family

My name is Beth and I have 2 kids; JB (12) and Caroline (14). JB was also diagnosed with Duchenne 11 years ago, and since then I founded JB’s Keys to DMD to improve the quality of life and care for those living with DMD

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The Marlin Family

We are the Marlin family—Terry and Sonya with two sons, Jonah (16) and Emory (13). Both of our boys have been diagnosed with DMD, which led us to found FightDMD with the goal of finding a cure for muscular dystrophy.

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The Dreher Family

We’re the Dreher family, living in Peterborough, NH. Our youngest son, Gus, was diagnosed with Duchenne Muscular Dystrophy in 2009 and we’ve been running the Hope for Gus Foundation for the past 9 years.

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The Gunther Family

We are the Gunther family; Stephen, Vanessa, Brea (11), and Drew (8) from Pennsylvania. Drew was diagnosed with Duchenne Muscular Dystrophy on Valentine’s Day of 2019, at the age of seven. We started a small non-profit called “Wishes for Drew” because of Drew’s affinity for blowing dandelion wishes in the wind.

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The Parisi Family

We are the Parisi family, with two sons; Caeden and Devin. Both of our boys have been diagnosed with DMD, which led us to create C&D together and work to help find a cure for Duchenne.

Resources

THE SCIENCE EXPLAINED

COVID-19 Vaccination and Gene Therapy

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CRD’s Programs

Whole Genome Sequencing

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Neutralizing Antibodies

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CLINICAL TRIALS

For families who are newly diagnosed with Duchenne Muscular Dystrophy, navigating clinical trials can often be confusing. We’ve made the process more approachable by compiling current trials into an easy-to-read format, filled with information such as inclusion/exclusion criteria, end date, and much more.

View the Full List Here

LEARN MORE ABOUT GENE THERAPY

Watch these informative videos on gene therapy created by NORD (National Organization for Rare Disorders), a nonprofit patient advocacy organization fighting to improve the lives of patients with rare diseases for over three decades through providing services and direct support to the rare community and leading innovation in policy and research.

Gene Therapy: Your Questions Answered