Medical Equipment, Rare Diseases, and Rainbows

RDR Staff

The fifth annual Rainbows in the Wind Festival hosted by the Little Miss Hannah Foundation in Las Vegas is this weekend. Last year, the festival’s turnout was over 1,200 people and the foundation was able to raise over $20,000. 
As the event grows, the Little Miss Hannah Foundation’s mission remains the same; to help enhance the quality of life for young children that are diagnosed with rare diseases, undiagnosed complex medical needs, and children who have been placed in hospice or palliative care in Southern Nevada. The fundraising event is a family orientated fun-filled evening of music, activities, dancing, and raffles, that raises money to help support Las Vegas families of children diagnosed with rare, life-limiting, and complex medical conditions in need of assistance.
Catch The Rainbows in the Wind Festival:
Date:   Saturday, July 23, 2016, 5:30 pm to 9:00 pm
Location: Town Square Center Park, Town Square Las Vegas
For donation, partnership, sponsorship, or participation inquiries, click here.

Little Miss Hannah Foundation 

The Little Miss Hannah foundation that organizes the Rainbows in the Wind Festival is a family-run nonprofit organization started in 2011 of memory of Hannah Ostrea, who was diagnosed with Gaucher type 2 or 3 and passed at the age of 3. The nonprofit is focused on helping other rare and medically affected families in a multitude of ways with a large focus on assisting families with obtaining the proper medical equipment needed to lead a productive life.  
Providing better medical equipment or even more accessible medical equipment could help lead to extending a rare disease patient’s life, or increase the quality of their lives. Many rare disease patients are limited to what their disease allows them to do, which in most cases, isn’t much. To help meet a patient’s medical needs of better equipment, treatment, or knowledge, could lead them to live a normal life and help extend their lives.
The foundation offers grants and programs to assist families in need such as:
Little Miss Hannah Foundation is partnered with Global Genes – Allies in Rare Disease, one of the leading rare and genetic disease patient advocacy organizations in the world, to bring awareness and promote legislation to find treatments for the thousands of rare diseases that affect children. 

Gaucher Disease

Gaucher disease is a rare inherited disorder caused by a deficiency in a particular enzyme. The genetic condition is caused by the inability to make an enzyme, glucocerebrosidase, which breaks down fatty substances in the body. This leads to build up of these substances in many tissues of the body, including the bones, organs, and bone marrow. These substances then prevent cells and organs from working properly.
Gaucher disease can be categorized in three different types:
Gaucher is an autosomal recessive disease. The mother and father must both pass 1 abnormal copy of the disease gene to their child in order for the child to develop the disease.
Currently, numerous enzyme replacement therapies (ERTs) and substrate reduction therapies (SRTs) are available to Gaucher disease and they are only effective in Gaucher type 1 patients
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