Southeastern Rett Syndrome Alliance

ATTENTION!!!!!

PARENTS OF ANYONE THAT HAS SPECIAL NEEDS

Can you imagine leaving your child or loved one in someone’s care without giving them any detailed instructions on what their needs are, what to do, and how to care for them? This is exactly what you are doing if you have not prepared a plan for their future care, supervision and security when you are no longer here.

Stop and think about what would happen if tomorrow morning you were not here. Do you want someone else to try to decide what to do for your child without any instructions from you? Is it fair to your child or to them?

When the parents of a child with special needs passes away, the child is going to face a difficult and challenging transition. Only you have the ability to this transition as easy as possible for your loved one and the people who will be caring for them.

WORRIED? CONCERNED? Of course you are.

Bart Stevens will address four key issues in planning: Lifestyle, Legal, Government Benefits and Financial Needs.

PARENTS!!!!!

DO YOU HAVE A CHILD WITH SPECIAL NEEDS?

For additional information please call: Toll Free Number: (888) 447-2525

Dear Families,
Thank you for participating in our InterRett Work Practices Pilot study.
We are now approaching our third and final stage of the pilot! Please read below for an update on how the pilot study progress.
What’s been happening so far
In August last year we invited 173 families who were current members of our InterRett Phenotype Database and who had completed the Family Questionnaire, to take part in the new pilot study. Since then we have had 138 families participating. Currently, 136 mums and dads (from 103 families) have completed Part 2 and are now ready for part 3. This pilot study will also be the topic of two presentations to be held in health related scientific forums in 2008.
If you haven’t done parts 1 and 2
If you haven’t done part 1 & 2 yet, its not too late! However, we are getting ready to move on to Part 3 of the study, and would like it if everyone who is interested to please complete part 1 & 2 in the next few weeks. Send a quick reply to this email if you would like your login details sent to you again.
If you who have finished Parts 1 and 2
Thank you to everyone who has completed Part 1 and 2 We will be sending you instructions on how to complete the final part of the study soon. Also, if you have not returned your consent form, please read below.
About Part 3
Our occupational exposure experts have read through your job history and selected jobs that are significant in relation to this pilot. Most people will have between 1 and 3 jobs selected. The questions are nearly all multiple choice, with the occasional short answer, and will take you about 5 minutes for each job.
Consent Forms
If you haven’t yet returned your consent form, please print it out (a copy is attached to this email), sign and return by fax, post or scan and send by email. Details of address, email and fax number are below.
Thanks for your continuing participation and support!
Kind regards,
The InterRett Team

Clinical Associate Professor Helen Leonard – Director
Professor Nick de Klerk – Co-Director
Professor Sue Fyfe – Co-Director
Alison Anderson – Project Coordinator
Dr Philippa Carter – Research Officer
Meg McHugh – Research Assistant
International Rett Syndrome Study
Telethon Institute for Child Health Research
PO Box 855, West Perth WA
AUSTRALIA, 6872
Phone: +61 8 9489 7790 or +61 419956946
Fax:     61 8 94897700
Email: rett@ichr.uwa.edu.au

FOR IMMEDIATE RELEASE:
June 27, 2007
CONTACT: Chuck Curley
781-762-2240

International Rett Syndrome Association and Rett Syndrome Research Foundation Complete Merger Combined Operations of Leading Rett Syndrome Organizations Will Lead to Enhanced
Research, Treatment and Advocacy Programs (Cincinnati, Ohio – June 27, 2007) – The International Rett Syndrome Association (IRSA) and the Rett Syndrome Research Foundation (RSRF), the world’s two leading Rett syndrome organizations, announced today that all approvals necessary to effectuate their merger have been obtained. The merger, approved unanimously by both boards of directors and by over 99% of the voting members, will be effective on June 30, 2007. The combined entity, known as The International Rett Syndrome Foundation (IRSF), will continue to focus on research, family services and advocacy related to the treatment and cure of Rett syndrome.

“Today marks the beginning of a new era in the search for a cure and treatments of Rett syndrome and related disorders,” said Kathryn Kissam, Chairman of the board of IRSF. “A unified Rett syndrome community is better prepared to help advance the science and serve the families affected by Rett syndrome.”

Chuck Curley will be the Executive Director of IRSF. “The combined entity will build upon the success of both organizations,” said Curley. “We look forward to expanded cutting-edge research programs and innovative family services. I am confident that together we can accelerate the search for treatments and a cure while advocating for the needs of affected individuals and families.”

About Rett Syndrome Rett syndrome is a neurological disorder which predominately impacts girls. While there are nearly 4,000 known cases of Rett syndrome in the United States, the disorder is genetically linked to more widespread neurological disorders such as autism, mental retardation and schizophrenia. Rett symptoms begin to manifest between the first six to eighteen months of life and eventually incapacitate the affected children so they cannot survive without constant care. The disorder causes seizures, respiratory and gastrointestinal abnormalities, and a variety of muscular and motor impairments.

About IRSA
The International Rett Syndrome Association (IRSA), founded in 1984, is the world’s oldest and most comprehensive non-profit organization dedicated to providing thorough and accurate information about Rett syndrome, offering informational and educational family support, and stimulating research aimed at finding the cause of Rett syndrome and methods for its prevention, control and cure. The Association has members in all 50 states and 72 foreign countries. For more information please visit www.rettsyndrome.org, or call 1-800-818-RETT.

About RSRF
The Rett Syndrome Research Foundation was founded in late 1999 by a passionate group of parents who were committed to funding research aimed at finding treatments and a cure for Rett syndrome. Today RSRF is the world’s leading private funder of Rett research. In the last five years RSRF has funded 104 projects at premiere institutions totaling over $11 million. The foundation has proven to be fiscally responsible by directing 97% of each dollar donated directly to program services and was awarded Charity Navigator’s prestigious 4-Star rating. For more information please visit www.rsrf.org, or call 1-513-874-3020.