This evening, representatives from the MOMS Club of Salt Lake City participated in the first ever Little Miss Hannah Foundation Lollipop Workshop! The lovely participants learned how to make, decorate, and package lollipops at home. They proceeded to make 55 delicious treats to serve as a future fundraiser for the Foundation, in the following flavors:…
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Aqua Therapy
My son, Bertrand‘s first aqua therapy session was a success! Not only did he have fun and do well in the water, the results were carried forward on land the rest of the day. Aqua therapy will definitely become a part of his therapy regimen. Aqua therapy is also known as Aquatic Therapy, Pool Therapy,…
Understanding Sibling Loss
One of our biggest concerns during Hannah’s illness, especially during the last few months of her life, was how her disease and her loss of skills and interaction was affecting her older brother and sister. There were very few articles published anywhere on the internet, and the ones we found were mostly discussing sibling…
Little Miss Hannah’s Legacy Brings Awareness to Rare Disease
written by Mina Frannea, Today’s Mama Each year on Rare Disease Day, participants from around the world advocate for those who are affected by rare diseases, bringing attention to the need for improved access to treatment and for higher standards in diagnosis and care of patients. The observance of Rare Disease Day falls on the last day of…
Vanderburg Elementary’s Second Annual WRDDay Event
On February 24, 2012, Vanderburg Elementary School celebrated World Rare Disease Day by participating in Jeans for Genes day. The kids and staff were encouraged to forgo school uniforms and wear jeans that day as well as their “Be Kind” shirts (Josh Stevens Foundation), and it was amazing to see such a beautiful sea of denim…