ZoomWalkathon.com Video Conferencing
Isla Rose Foundation is Actively Working to Save
Children with Orphaned Rare Diseases
FOR IMMEDIATE RELEASE
May 2020 (Southport, Merseyside) – The family of Isla Rose in Southport is fighting for the life of their 19-month-old daughter Isla Rose Steel. She was born in 2018 with a rare disease, Non-ketotic hyperglycinemia (NKH). It is an inborn metabolic disorder caused by a defect in the enzyme system that breaks down the amino acid glycine, resulting in an accumulation of glycine in the body’s tissues and fluids. This creates neurological conditions, including seizures, vision damage, and lack of muscle control.
A rare disease is also known as an orphan disease because drug companies have not taken an interest in developing treatments for them, due to it not affecting enough of the population to make a profit. Children with NKH can experience daily seizures up to 100s per day and require 24-hour care. Isla is fortunate to have loving family members assisting around the clock to keep her safe and comfortable. In the search for a cure, the Steel family took the matter into their own hands and started a foundation to help Isla and many other families across the world. With Covid-19 fundraising has been impacted deeply. Determined to keep the research going the Sarah Steel and Isla Rose Foundation in partnership with Lucas John Foundation in the United States created a virtual website platform to host walkathons for nonprofits to use, Zoomwalkathon.com. By hosting Zoom the Room for NKH campaigns we are able to host distance fundraisers. Using Zoom technology, it allows for a virtual fundraiser while honoring social distancing requirements in every state. There are currently three NKH families actively running Zoom Walkathons across the country and more will be signing up. The first walkathon is scheduled for Isla Rose Foundation & Lucas John Foundation this Saturday, May 16th at 5 pm. This fundraiser is global with people signed up all over the United States and the United Kingdom with 100+ in attendance.
Since May 2020, the Isla Rose Foundation has been Raising Awareness for Rare Disease and Gene Therapy research– and the foundation is in continual fundraising mode for the cure. Due to the rarity of the condition, all the funding for research falls into the laps of the families of these babies.
At the core of the foundation are these essential
- Fundraising for rare disease research.
- Fundraising for gene replacement therapy.
- Offer scholarships for families
- Care kits for NICU at Phoenix Children’s Hospital.
- Offer financial support to families with children diagnosed with rare diseases.
- And, a variety of alternative therapy support on the Isla Rose Foundation website.
When Rare isn’t so Rare
There are approximately 7,000 known rare diseases in the world, with an estimated 25-30 million people living with rare genetic diseases. While specific conditions can be isolated, the total number of people with an orphan disease is overwhelming.
The Cure: Gene Replacement Therapy is the answer and the cure for many children and adults living with an orphan disease. Each advancement in gene therapy for any disease widens the field for all the other rare diseases.
Now What: It is essential to bring awareness to rare diseases.
Gene Replacement Therapy for the cure and requires $3 million in funding for children worldwide.
Isla Rose Foundation
Name: Sarah Steel