Goodness Report

It All Started With A Wish: The Cystinosis Research Foundation

April 6, 2023

For this edition of the Goodness Report, we’re celebrating 20 years of the Cystinosis Research Foundation, including their Day of Hope conference and Natalie’s Wish fundraiser. Want to join them in the fight to cure Cystinosis? Consider donating here!

Natalie’s Birthday Wish

Idea Hall is thrilled to share that our client, Cystinosis Research Foundation (CRF), is celebrating 20 years of changing lives. CRF was born out of a young girl’s birthday wish in 2003. Natalie Stack was asked by her parents, Jeff and Nancy Stack, what she wished for on her 12th birthday.  Natalie considered this question, then wrote on the back of a napkin that she wished “to have my disease go away forever,”. What started as one girl’s wish has joined forces with the wishes of every person affected by Cystinosis: to find a cure for this life-altering disease.

What is Cystinosis? 

Cystinosis is a rare, inherited metabolic disease that is characterized by the abnormal accumulation of the amino acid cystine in every cell in the body.  The buildup of cystine in cells eventually destroys all major organs of the body. Cystinosis affects approximately 600 people, mostly children, in North America, and about 2,000 worldwide. Federal funding for research on rare diseases is virtually non-existent – most pharmaceutical companies remain uninterested because financial rewards are too small.  However, the ripple effect CRF causes goes beyond cystinosis, as knowledge gained by studying one disease often leads to advancements in other rare diseases and more popular disorders.

Natalie speaking at Day of Hope

Leaders in Goodness

Today, CRF is the largest fund provider of grants for Cystinosis research in the world. CRF has raised more than $67 million issuing 220 grants in 12 countries and secured FDA approval for a clinical trial to find a cure, giving new hope to patients worldwide. 100% of all funds donated to CRF go directly to supporting Cystinosis research.

A Day of Hope

This last weekend, the CRF community came together for the 2023 Day of Hope family conference. The President and Founder of CRF, Nancy Stack, has been hosting Day of Hope since the very beginning. 

“CRF hosts the Day of Hope family conference and Natalie’s Wish fundraiser each year to unite the Cystinosis community, share key research updates and raise money for continued medical and scientific advancements. For years, the Idea Hall team has collaborated with us to bring our vision for these events to life through e-blasts, web pages, event signage, invitations and more. This year’s designs were truly something special. The team delivered unique designs that breathed new life into these events, not only highlighting 20 years of progress, but also energizing and inspiring our community to keep the research going for the next 20 years and beyond!”

The three day event not only gives families the opportunity to be together, but also includes presentations and break-out sessions by CRF-funded researchers and Cystinosis clinicians.   The time together is priceless for all of the CRF families and children. For many of the kids, Day of Hope is the highlight of their year. A reunion, a celebration, an invitation to learn – Day of Hope provides a place for the CRF community to use their voices and strengthen the bonds that tie them together. 

Day of Hope - Party Image

Interested in how Idea Hall can help your organization build a lasting legacy of positive change? Schedule a call today!