Support Our Cause
U.R. Our Hope is a registered 501 (c)(3) organization and all donations are tax deductible.
Currently, we use the donations we receive to support our families along the journey by:
- Providing meals during hospitalization or times of crisis
- Providing gas/meal cards to families traveling out-of-town or out-of-state for medical appointments
- Covering a portion of funeral costs/arrangements when families lose a child
- Covering costs of record requests, shipping, and application fees for clinical studies
In the future, we would like to be able to support families in many different ways, which include:
- Covering the cost of medical visits not covered by insurance
- Covering the cost of genetic testing
- Covering travel costs (air/bus fare, hotel accommodations, meals, etc) for medical visits and for families to attend annual conferences
- Covering costs for medical and therapy equipment
We also hope to create and sustain a national network of Undiagnosed Patients for use by physicians. Currently, there is no national database storing the valuable information Undiagnosed Patients present to the medical community. The creation of a national network would allow physician’s to input their patient’s cases (symptoms and not personal identifying information) and compare them to other cases in the United States. If a match is found, a doctor would then be able to contact the treating doctor of the matched patient to create real time collaboration. Our Director of Advocacy, Heather Long, has worked with Representative John Carter in Texas to create legislation to help create this network, but the bill has failed in the last 3 times it has been presented. Representative Carter’s office continues to support this bill as does U.R. Our Hope. We would like to be the organization behind the network and this would require a significant amount of money and partnerships.
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Randall’s Good Neighbor Program
If you shop at Randall’s, you can easily designate U.R. Our Hope as your Good Neighbor Charity and part of your purchase is donated to our organization! Simply link our charity number (13067) to your Remarkable Card by telling your cashier or customer service.
