Thank them for their time

Introduce yourself (and your daughter if she’s with you; and others if they are with you)

Briefly give them the background on Rett syndrome and your story:

1. RTT is a neurological disorder seen almost exclusively in females.
2. It is usually caused by a mutation of the MECP2 gene on the X chromosome.
3. Early development milestones appear normal, but between 6-18 months of age, there is a regression in skills, particularly affecting speech, hand use and coordination.
4. A hallmark of RTT is repetitive hand movements that may become almost constant while awake.
5. Other features include seizures, irregular breathing, and curvature of the spine.
6. Research can make a difference to provide care today and a cure tomorrow.

• Until IRSF was founded 20 years ago, no one had heard of Rett syndrome
• The approximately 1 in 10,000 parents were left to agonize about the cause of their seemingly normal daughter’s physical and mental deterioration.
• IRSF made integrating research, family support and awareness its core mission and funded the research that led to the1999 identification of the genetic culprit of Rett syndrome.
• With that breakthrough, and the realization that this rare genetic condition may be the Rosetta Stone of other late-onset neurological disorders from Autism to Schizophrenia, IRSF redoubled its efforts to increase awareness of the disorder.
• Five years ago, parents typically had a three year wait while doctors went through batteries of tests for less rare syndromes or lived with the imperfect fit of an “atypical” autism diagnosis.
• Thanks to IRSF’s efforts, children are now being diagnosed within months of first seeing a doctor, and tests for Rett syndrome are becoming part of early screening rather than a test of last resort.

We are seeking funding for IRSF to continue and expand these successful awareness efforts through the development of a series of conferences, the creation of educational materials, the maintenance of timely dissemination of information via newletters and the internet and targeting specific audiences of parents, educators, and clinicians.

Specifically:

HOUSE:

1. Congressman Steny Hoyer has requested $500,000 from the Public Health Improvement and Leadership account within the Centers for Disease Control for education and awareness for patients, health professionals and the public regarding Rett Syndrome.
2. I am here today to ask you to support IRSF and our request by writing to Chairman David Obey and expressing support for Congressman Hoyer’s request.
3. Chairman Obey is familiar with RTT – Actress Julia Roberts testified before his subcommittee in 2002 on behalf of RTT and funding for research.

SENATE:

1. Senator Kennedy has requested $500,000 from the Public Health Improvement and Leadership account within the Centers for Disease Control for education and awareness for patients, health professionals and the public regarding Rett Syndrome.
2. I am here today to ask you to support IRSF and our request by writing to Chairman Harkin and Byrd and expressing support for Senator Kennedy's request.
3. Chairman Harkin is familiar with RTT - he has been a friend to Ret syndrome families and our cause in the past.

• Get a commitment from the Congressman/Senator or their staff.
• Present your letter asking for their letter to either Chairman Obey, Chairman Harkin or Chairman Byrd.
• Will they write the letter?
• When will you hear back from them?
• Who can you be in touch with when you follow up?

Thank them again for their time and for their concern for and support for our girls.