Organizations Filed Purposes:
To accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity.
To fund research aimed at potential cures for Rett syndrome and to empower families through education
Our commitment to finding treatments and a cure for Rett syndrome compels us to advance cutting edge research. Through our research programs we fund basic, translational and neuro-habilitation research grants throughout the world. We fund post-doctoral researchers, host science symposia to allow for discussions and networking of the world's Rett experts. We fund compound development directly through financial support of high throughput screening systems as well as financially supporting clinical trials. We work to expand access to high quality treatments and care in our support of the Natural History Study, and by sponsoring a national learning collaborative geared toward definition and spread of evidence-based care of patients with Rett syndrome
We empower families through our robust educational programming, consisting of free monthly webinars covering health care topics of interest to families, as well as 4 in-person regional education days. We provide 24/7/365 access to 2 staff members who are devoted to family engagement. We provide educational materials for families, caregivers, schools and therapists. We advocate to federal officials, keeping Rett syndrome on the list of funding priorities. We work with industry in the design of clinical trials, ensuring the clinical trial environment is family centered. We support a network of clinics in North America that is building guidelines for clinical care, making those guidelines available to families as they work with their child's care team, ensuring they are receiving appropriate care.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Melissa Kennedy | Executive Director | 50 | $165,908 |
| Peter White | Board Chair | 2 | $0 |
| Gordon Rich | Treasurer/Secretary | 2 | $0 |
| Christian Mcmahan | Vice Chair | 1 | $0 |
| Mitch Bleske | Trustee - Started 7/1 | 1 | $0 |
| David Pass Pharmd | Trustee - Started 7/1 | 1 | $0 |
| Lisa Monteggia Phd | Trustee - Started 7/1 | 1 | $0 |
| Jospeh Horrigan Md | Trustee - Started 7/1 | 1 | $0 |
| William Babiarz | Trustee | 1 | $0 |
| Beth Farnum | Trustee | 1 | $0 |
| John Foard | Trustee - Left 6/30 | 1 | $0 |
| Steve Tomes | Trustee | 1 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202021299349300232_public.xml