Jayne Holtzer Research Grants Program
NORD’s Jayne Holtzer Research Grants Program provides seed grants to academic scientists for translational or clinical studies related to development of potential new diagnostics or treatments for rare disease. In at least two cases, these grants have resulted ultimately in FDA-approved treatments for patients. .
How it works
The studies funded with NORD research grants provide preliminary data, on drugs, devices or medical foods that researchers may then use to attract funding from government or industry sponsors to pursue further clinical studies.
Research Grant Policy
NORD’s research grant review guidelines follow those of the National Institutes of Health (NIH), and administrative costs are kept to a minimum. The grant selection process is unbiased and independent; awards are based solely on scientific merit, as determined by NORD’s medical advisors. Read the full research grant policy.
NORD research grants are funded largely by patients and patient organizations. In many cases, they are the only source of funding for the study of specific rare diseases. Donors may target their donations to research on a specific disorder. A minimum of $35,000 is required to fund a grant. When this target amount is reached, NORD begins the process of issuing a request for research proposals. If the target amount is not reached within a specified time-period, the funds may go towards a related condition. Donate to a research fund >
NORD grants are competitive and international. NORD’s Medical Advisory Committee is composed of rare disease medical experts who generously donate their time to help NORD provide this program on behalf of its members and the rare disease patient community.
About Jayne Holtzer
Jayne Holtzer (1950-2018) felt symptoms of myelofibrosis while she was helping her husband Mark Altemus in his fight against melanoma from 1988 to 1998. She had fatigue and was always cold. Being a dancer and a dance instructor in the NYC school system an avid surfer and incredible skier she had a strong kinesthetic sense of her body. I could “feel things at a cellular level” she would say. She felt the problem was in her bones and that It was difficult getting people to listen being in her 40’s and female. Diagnosis was slowed because it was much more common for older people to get myelofibrosis and not a lot of research money was being funneled in that direction.
Jayne had an intellect equal to most doctors. As with everything she did, Jayne was driven to find answers and treatment. She attended the medical conferences and followed the research. It was intimidating for them at times but Jayne learned through guiding Mark’s treatment to stand up for herself and guide treatment in order to stay alive. She survived for about 25 years when the average survival rate was 5-7 years. Jayne was a fighter. There were countless blood transfusions, double digit operations to keep circulation in her legs and a daily first line of defense against common germs. Mark died after a 10-year battle with melanoma at the age of 47 and Jayne about 20 years later. There must have been over a thousand medical appointments between them striving to find the latest breakthrough in their diseases.
Jayne was a remarkable person full of fight and confidence the exuded in her personality. In death she is still searching for the cures. She has left her estate to research groups to find a cure for the diseases that took her and Mark’s life so prematurely.