OUR PROUDEST PRESS: 2020
January 14, 2021
January 14, 2021
In 2020, we were thrilled to spread awareness for our cause in a variety of mediums and publications, including an appearance on the TODAY Show. We also had the opportunity to amplify the voices of rare disease parents and families through the blog we started in late 2019. Here are our top 10 stories of 2020!
1. Forbes 30 under 30 and Business Insider 30 under 40
Founder and President, Rich Horgan was named to Forbes 30 Under 30 in the healthcare category and Business Insider’s 30 Under 40 list of young leaders transforming healthcare. We are proud of Rich for this recognition and grateful that this brought more awareness to rare, genetic diseases and the work we are doing to fight them.
2. Boston Globe
In June, CRD was featured in the Boston Globe, highlighting the journey we began almost 3 years ago, and the progress we have made since then.
3. TODAY Show
Also in June, we had the opportunity to share our groundbreaking work with Keir Simmons on the TODAY Show! We shared our unique drug development process that uses CRISPR to create life-saving therapeutics for those with no previous hope for treatment.
After the TODAY Show, Rich and his brother Terry, the catalyst behind Cure Rare Disease, were guests on the Elvis Duran Morning Show. They discussed CRISPR and our drug development process, fundraising, and our new CRD wine that was launched this year.
Our feature in Muscular Dystrophy News was listed in the publication’s “Top 10 Stories of 2020”, where we were in good company with Pfizer and Sarepta Therapeutics among others. Our feature detailed CRD’s story and the CRISPR technology we will use to dose our first patient.
1. Dad of Steel
Terry Marlin, father of two boys with Duchenne, discusses the difficulties of going through the same obstacles with each of his sons, and how he and his family transition with the progression of Duchenne.
2. I’m a sibling and I’m here too
In a family affected by disability, it is easy for an able-bodied sibling to get overlooked. Lydia Safford shares her perspective as an able-bodied sibling of two brothers with Duchenne.
3. Finding the Perfect Home for our DMD Family needs
Finding the perfect home with all the necessary accessibility adaptations is difficult for many families affected by rare disease. Board member Liz Duffy shares the struggles of finding a home to fit her family’s needs, while also reminding us that rare disease families are more than the diagnosis.
4. When No Progress Is Progress: A Duchenne Dad Perspective
With a degenerative disease, no progress is good progress. Duchenne Dad Steve Dreher writes about his struggles to help people understand that conventional progress does not apply to DMD.
5. As a DMD mom, I choose to pivot
Duchenne mom Kristen Parisi has two sons affected by the disease. Although it is difficult to watch her second son Devin experience the progression of the disease that has already affected his brother Caeden, she chooses to remain hopeful.
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