News
January 2023
To: Families in the Midwest
From: Dr. Art Beisang, Gillette Children’s/Rett syndrome clinic
Re: Participation in the new Rett syndrome Natural History Study
Greetings,
Two of the important factors that lead to the development of disease changing therapies for Rett syndrome are:
These factors made Rett syndrome an attractive target for pharmaceutical companies.
The original NIH Funded Natural History Study has ended, it gave us a huge increase in
knowledge about how Rett syndrome changes with age, (absent Rett specific medical therapies). This Information was needed before pharmaceutical companies would consider developing therapies for Rett syndrome.
A new Rett natural history study has started.
Participation is extremely important. With new therapies comes a new baseline of skills to measure changes against. Without an ongoing baseline (as measured by the new NHS), the pipeline of medications development may slow because it will be harder to measure change while testing a new medication.
The new Natural History Study involves about an hour of questions (done at home) and a brief physical exam which can be completed during the Rett clinic visit at Gillette.
Please consider enrolling in the new NHS study.
Thank you.
Dr. Arthur Beisang, M.D.
Gillette Children’s
Katherine Harrison, MPH, CCRC
Research Coordinator II
Gillette Children's
200 University Ave SE
St. Paul MN, 55101
Phone: 651-578-5223
KatherineAHarrison@gillettechildrens.com
To: Families in the Midwest
From: Dr. Art Beisang, Gillette Children’s/Rett syndrome clinic
Re: Participation in the new Rett syndrome Natural History Study
Greetings,
Two of the important factors that lead to the development of disease changing therapies for Rett syndrome are:
- The strong fund raising and advocacy from friends and family.
- The Rett Syndrome Natural History Study (NHS)
These factors made Rett syndrome an attractive target for pharmaceutical companies.
The original NIH Funded Natural History Study has ended, it gave us a huge increase in
knowledge about how Rett syndrome changes with age, (absent Rett specific medical therapies). This Information was needed before pharmaceutical companies would consider developing therapies for Rett syndrome.
A new Rett natural history study has started.
Participation is extremely important. With new therapies comes a new baseline of skills to measure changes against. Without an ongoing baseline (as measured by the new NHS), the pipeline of medications development may slow because it will be harder to measure change while testing a new medication.
The new Natural History Study involves about an hour of questions (done at home) and a brief physical exam which can be completed during the Rett clinic visit at Gillette.
Please consider enrolling in the new NHS study.
Thank you.
Dr. Arthur Beisang, M.D.
Gillette Children’s
Katherine Harrison, MPH, CCRC
Research Coordinator II
Gillette Children's
200 University Ave SE
St. Paul MN, 55101
Phone: 651-578-5223
KatherineAHarrison@gillettechildrens.com
After another successful fundraising year, the Midwest Rett Syndrome Foundation is thrilled to donate $50,000 to the International Rett Syndrome Foundation! This donation allows us to fulfill our mission: Support and educate families while FUNDING RESEARCH. A big THANK YOU to everyone who supports our efforts in the Midwest!
Pictured L to R are Melissa Kennedy, Executive Director of the IRSF and Lisa Evert, President of the MRS
Pictured L to R are Melissa Kennedy, Executive Director of the IRSF and Lisa Evert, President of the MRS
We ended 2022 in grand style! A donation of $10,000 was made to Gillette Children's/Rett Syndrome Clinic on December 28th. The successful Rock for Rett event in November allowed us to continue supporting our local Center of Excellence. A special THANK YOU to MRSF board member, Brandon Hofer, for being the lead coordinator of the fundraiser. Pictured from L to R are Aleksys Patterson, Clinical Research Coordinator; Chantel Burkitt, Ph.D., Clinical Scientist; Stephen Bariteau, Chief Development Officer; Lisa Evert, MRSF president; Brandon Hofer, MRSF board member; Arthur Beisang, MD/Rett Clinic Leader; Jill Evert, patient. Special mention: Tim Feyma, MD/Rett Clinic Leader.
Rett Research Ready!
www.RettSyndrome.org
www.RettSyndrome.org
Rettsyndrome.org has launched a program to enable families with loved ones affected by Rett syndrome to explore and participate in clinical research. Rett Research Ready™ is an online platform that includes education, resources and support to help families consider volunteering for research studies. A key resource of Rett Research Ready™ is a search tool called myRett Trial Finder. Using this tool, families can easily search for clinical trials specific to Rett syndrome, find accurate and easy-to-understand information, and connect directly with investigators to discuss participation in a trial.
Use this link to get more information:
https://www.rettsyndrome.org/rett-research-ready/
https://www.rettsyndrome.org/rett-research-ready/