Request For Nominations: Rare Disease Patient Advocacy and Research Awards
The Megan K. Crowley Award
This award recognizes outstanding contributions in the areas of Rare Disease Patient Advocacy at the Boler-Parseghian Center. Such contributions may include, but are not limited to: 1) Raising awareness of Rare Diseases at the University of Notre Dame with regional, national and international organizations 2) Developing products/tools/technologies that help rare disease patients and their families with communications and disease management. Awardees will receive a $1000 cash award and a plaque.
The John M. and Mary J Boler Rare Disease Research Award
This award recognizes outstanding original scholarship and research in rare and neglected diseases at the Boler- Parseghian Center at the University of Notre Dame. Such contributions may include clinical or laboratory-based (basic or translational) research in rare and neglected diseases. Up to two Awards may be presented. Awardees will receive a $1000 cash award and a plaque.
This award is open to all current undergraduate students in their Senior Year at the University of Notre Dame.
Award nominations should be accompanied by:
- the student’s curriculum vitae
- a one-page statement from the student summarizing the nominated work
- a letter from the nominator that clearly explains significance of the work in the context of patient advocacy
- URL of Web pages/ other demonstrated evidence and supplementary information concerning the work. Nominations will be judged on the quality and impact of the student’s work
Please also provide the following information:
- The nominee’s mailing (and e-mail) address and phone number
- The nominator’s name, e-mail address and phone number
Nominations to be submitted by December 1, 2019 to firstname.lastname@example.org
Award winners are invited to attend and receive the award at Boler-Parseghian Annual Conference on Advancing Rare Disease, Research, Therapy and Patient Advocacy.
CLINICAL TRANSLATIONAL SEMINAR SERIES
Walk for NKH Sept 7th- Jordan Hall South Lawn Donate here!
Congratulations to Danielle Terek, ND'20 for publishing the first Spinal Muscular Atrophy with Respiratory Distress type 1 (SMARD1) disease summary in the NORD database!
Danielle Terek published the first disease summary for SMARD1 for the National Organization of Rare Disorders (NORD) database! https://rarediseases.org/rare-diseases/spinal-muscular-atrophy-with-respiratory-distress/ She conducted extensive review of literature, assessed patient medical records and worked with a local SMARD patient family to develop the report, which was then reviewed by internationally established expert clinicians prior to publication in the NORD database.
The NORD database gets approximately 1 million visits per month! Notre Dame students from BIOS 40450 and BIOS 60565 undertake editorial internship to support this extensive rare disease database for over 3000 rare diseases. It presents an invaluable resource for patients and families, clinicians, researchers and other advocates from all over the world. Well done Danielle!
Supported by the BIll and Lisa Powers Family Fund
Congratulations to Gabrielle O'Dougherty ND '19 for publication in the American Journal of Case Reports!
Gabrielle O'Dougherty is the recipient of the 2019 John M. & Mary Jo Boler Research Award.
Title: Case Report: Complications of Insufficient Dura and Blood Loss during Surgical Intervention in Shprintzen-Goldberg Syndrome.
Authors: Gabrielle R O'Dougherty, Daniel H Fulkerson, Melissa Kern, Kasturi Haldar, Barbara Calhoun.
Supported by the Bill and Lisa Powers Family Fund
CONGRATULATIONS TO OUR 2019 GRADUATES!
Megan K. Crowley, Recipient Gabrielle O'Dougherty, Recipient
2019 Megan K. Crowley Award for Patient Advocacy 2019 John M. & Mary Jo Boler Rare Disease Research Award