In this week’s edition of the Goodness Report, we are spotlighting the Cystinosis Research Foundation’s (CRF) annual Natalie’s Wish 2024 virtual fundraiser, a month-long effort occurring each April to raise funds for the continuation of vital cystinosis research, supported by Idea Hall.
As a fundraiser that brings in a significant percentage of CRF’s annual donations, Natalie’s Wish is key to CRF’s fundraising strategy, with last year’s event bringing in an incredible $1.12MM for cystinosis research. In addition to the Natalie’s Wish fundraiser, Idea Hall also spearheads CRF through the design and production of the Cystinosis Magazine, social media strategy, email marketing content production and more.
What is Cystinosis?
It’s highly likely that before reading this article, you had never heard of cystinosis. As one of the 7,000 rare orphan diseases in existence, cystinosis is an inherited metabolic disease 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, including the kidneys, liver, eyes, muscles, bone marrow, thyroid and brain. Cystinosis affects a mere 600 people, mostly children, in North America, and only about 2,500 worldwide. Because cystinosis is so rare, federal funding for research is practically absent, and there is minimal interest from pharmaceutical companies to conduct this research.
Founded in 2003, the Cystinosis Research Foundation exists to address this lack of funding and research. To-date, CRF has raised over $70 million (about $22 per person in the US) for cystinosis research, funding 235 research studies and two FDA approvals to find a cure and fund more effective treatments for cystinosis. Idea Hall is proud to have supported CRF through its talent, time and treasure for nine years.
Natalie’s Wish
On her 12th birthday, Natalie Stack was asked by her parents Jeff and Nancy Stack what she wished for most. Natalie wrote on the back of a napkin that she wished “to have my disease go away forever.” Soon after, the Cystinosis Research Foundation was founded by Nancy and Jeff Stack with that wish as their North Star. Now, over twenty years later, what started as one little girl’s wish has turned into a global community, a research powerhouse and a movement to create a world without cystinosis. In the spirit of Natalie’s birthday wish, each April, the CRF community joins to show their commitment to finding better treatments and a cure for the children and adults living with cystinosis.
Looking Ahead to 2024
After accomplishing so much in recent years–particularly the FDA approval of the stem cell and gene therapy trial aimed at finding a cure for cystinosis –2024 marks a new beginning for CRF and Idea Hall’s partnership, centered around a resurgence of CRF’s dedication to funding research, accelerating novel treatments, and recruiting the best and brightest for the cystinosis research community.
Natalie’s Wish has become a cause near and dear to everyone at Idea Hall. We take pride in the work we do to raise excitement and awareness of this fundraiser to fund life-changing research for cystinosis. From logo and ad design to the production and international mailing of a physical fundraising package, we look forward to helping CRF breathe new life into the Natalie’s Wish fundraiser each and every year.
Idea Hall Champions CRF
For Natalie’s Wish 2024, CRF and Idea Hall wanted to emphasize their community’s commitment to science, innovation and groundbreaking cystinosis research in the event design. Inspired by the brilliant researchers funded by CRF and the genetic research that’s changing the lives of those with cystinosis, Idea Hall decided to combine the hopeful, symbolic meaning of a dandelion with an image of the CTNS gene, a small sequence of bands representing a genetic mutation that ultimately causes cystinosis. Just as the pieces of this genetic sequence are used to anchor the stem of the dandelion in our design, so does the CTNS gene anchor CRF’s mission, research and hope for a cure. It is what unites their community and what started CRF’s mission, but it does not define who they are or where they are going.
Targeting cystinosis patients, their families and key donors who support cystinosis research, the Natalie’s Wish fundraiser is designed to ground audience members in CRF’s history, inspire potential donors by showcasing CRF’s progress to-date and encourage everyone to donate and take part in Natalie’s Wish.
To maximize donations through all mediums, Idea Hall also created and included a custom QR code within the physical mailer which, when scanned, directs users to the Natalie’s Wish web page where they can learn more about CRF’s mission, get information about research progress, and donate to the organization.
Support Natalie’s Wish 2024
If you’d like to join CRF this April for their month-long Natalie’s Wish fundraiser to celebrate over 20 years of impact, ring in a new era of progress and raise funds for life-saving cystinosis research, visit the Natalie’s Wish 2024 website here.
If you’re interested in igniting similar success for your organization or want to explore how your organization can partner with Idea Hall, please contact Michelle Ruiz-Ponce at michelleRP@Ideahall.com or Rebecca Hall at Rebecca@ideahall.com.
