March 2, 2010
February sure felt like October RTT awareness month
What an incredible month for Rett syndrome. Thanks to so many for making it a priority! Thought we’d sum it all up for you. Some events were planned and orchestrated, some were not. Remind anyone of day-to-day life with Rett syndrome? Well, when we added them all up, we just felt compelled to designate February as *UNofficial* Rett Syndrome Awareness Month! Here’s why:
www.msnbc.com Feb 24th 1-day ad Earns Gold Medal for Research to Reality Campaign
A message from IRSF’s executive director, Stephen Bajardi:
"Congratulations to everyone and thank you all for your hard work. It is exciting to report on the success of the February 24th MSNBC event. As you know, IRSF was the recipient of an extremely generous ad donation which was hosted on MSNBC’s homepage for a full 24 hours on the 24th!
The creative work for the ad was donated by The Vidal Partnership and all of it was made possible by IRSF Board member Christian McMahan. The MSNBC website alone, which generates approximately 3 million visitors per day, brought the IRSF website 7,745 unique visitors resulting in a total of $80,845 in online donations!
We extend our deepest gratitude to each of you for the significant role you played in the success of the event. The buildup and publicity generated by your emails, phone calls, away messages and status posts made this achievement possible. February 24th is officially the greatest day in online giving in Rett syndrome history.
Thank you so much for all you’ve done to make this possible."
February Research to Reality - Where does your money go?
February opened with IRSF’s first 2010 ANGEL award, committing $446,000 to David M. Katz, Ph.D., Professor of Neurosciences, Case Western Reserve University School of Medicine for a translational research program. Studies in mouse models and patients have implicated deficits in Brain Derived Neurotrophic Factor (BDNF), a key neuronal signaling molecule, as one factor contributing to neurologic dysfunction in RTT. This understanding will now be translated into evaluation of existing drugs, as well as molecules under development for other diseases, which may improve numerous aspects of Rett syndrome, including breathing problems, one of the more serious complications of the disease.
February Advocacy
Rare Disease Honoree
Executive Director, Stephen E. Bajardi, and board member of the National Organization for Rare Diseases (NORD), sent the following letter to the office of Congressman Hoyer to honor him for his contributions for rare diseases and Rett syndrome:
Betsy,
On behalf of the International Rett Syndrome Foundation, the families of the Rett syndrome community and all families touched by rare diseases, I am writing to honor Congressman Hoyer on World Rare Disease Day, February 28th, and to send a warm and grateful thank you to him for his longstanding and uncompromising support of advancing cures and treatments of Rett syndrome and all rare diseases.
Rare diseases affect over twenty five million Americans. However, it is difficult for many to imagine or know the isolation, indifference and personal challenge one faces when a family member, close relative or friend is touched by a rare disease. We hope for and occasionally do find champions, and to have a champion like Congressman Hoyer is a wonderful blessing.
Rett syndrome, with Congressman Hoyer’s support was one of the rare diseases to be reversed in mice, an extraordinary piece of good fortune and solid scientific exploration. To understand the significance of what Congressman Hoyer’s support meant for many Americans touched by rare disease I share this quote;
"Rett Syndrome could indeed prove the Rosetta Stone, allowing scientists to develop techniques for understanding the effects of other mutant proteins that affect neurons,” said Dr. Laura Mamounas, program director for the National Institute of Neurological Diseases and Stroke (NINDS) at the National Institutes of Health. The NINDS is US federal agency that supports research on Rett syndrome. People with disorders from autism to Fragile X could benefit from findings in the area of Rett, an autism spectrum disorder affecting mainly females. “Since this discovery there has been a sea change in attitude about the way we think about neurological disorders. This seminal discovery supports the view that perhaps Rett is a neurological disorder that could possibly be treated by therapeutic interventions,” said Dr. Mamounas. “Until now, we hoped that was the case, but did not have concrete scientific evidence to support this idea. This has all changed”.
We would like everyone to know, that on this day February 28th, we honor Congressman Hoyer for all he has done, for the lives he has touched and for the possibility of a better future he has created. We are just beginning to realize that many of the secrets to mainstream diseases, like autism and other mental health conditions, may lie in the discoveries made in smaller, rare diseases. We must work to understand both. Congressman Hoyer’s is a gift of life. His support is our hope...
Thank you.
Stephen E. Bajardi
Executive Director
International Rett Syndrome Foundation
On behalf of the International Rett Syndrome Foundation, the families of the Rett syndrome community and all families touched by rare diseases, I am writing to honor Congressman Hoyer on World Rare Disease Day, February 28th, and to send a warm and grateful thank you to him for his longstanding and uncompromising support of advancing cures and treatments of Rett syndrome and all rare diseases.
Rare diseases affect over twenty five million Americans. However, it is difficult for many to imagine or know the isolation, indifference and personal challenge one faces when a family member, close relative or friend is touched by a rare disease. We hope for and occasionally do find champions, and to have a champion like Congressman Hoyer is a wonderful blessing.
Rett syndrome, with Congressman Hoyer’s support was one of the rare diseases to be reversed in mice, an extraordinary piece of good fortune and solid scientific exploration. To understand the significance of what Congressman Hoyer’s support meant for many Americans touched by rare disease I share this quote;
"Rett Syndrome could indeed prove the Rosetta Stone, allowing scientists to develop techniques for understanding the effects of other mutant proteins that affect neurons,” said Dr. Laura Mamounas, program director for the National Institute of Neurological Diseases and Stroke (NINDS) at the National Institutes of Health. The NINDS is US federal agency that supports research on Rett syndrome. People with disorders from autism to Fragile X could benefit from findings in the area of Rett, an autism spectrum disorder affecting mainly females. “Since this discovery there has been a sea change in attitude about the way we think about neurological disorders. This seminal discovery supports the view that perhaps Rett is a neurological disorder that could possibly be treated by therapeutic interventions,” said Dr. Mamounas. “Until now, we hoped that was the case, but did not have concrete scientific evidence to support this idea. This has all changed”.
We would like everyone to know, that on this day February 28th, we honor Congressman Hoyer for all he has done, for the lives he has touched and for the possibility of a better future he has created. We are just beginning to realize that many of the secrets to mainstream diseases, like autism and other mental health conditions, may lie in the discoveries made in smaller, rare diseases. We must work to understand both. Congressman Hoyer’s is a gift of life. His support is our hope...
Thank you.
Stephen E. Bajardi
Executive Director
International Rett Syndrome Foundation
February Awareness
Charlie Rose Brain Series
Our children with Rett syndrome inspire greatness in all of us. People who never knew how to “ask”, will suddenly, forcefully, bravely, sincerely, humbly learn how for the sake of our kids.
And how about the CBS FILMS, Inc. "Extraordinary Measures" Inspirational Quilt, which was an online competition for real people to post inspirational videos of their quest to make their own miracles? The votes are in, and thanks to Jason Rothschild’s heartfelt story, all children affected by Rett syndrome win. Well done John Crowley and hats off to you Jason Rothschild!
