International Rett Syndrome Foundation

The IRSF Advocacy Tool Kit

What to do and How to do it

1. Find your Congressman and Senators using this website.

2. Make an appointment!

All Senators and Representatives have multiple “district” offices
Call the “main” office (NOT the one closest to where you live, but the one in the biggest town in the district or state)
Ask to speak to the District Director
Tell the District Director who you are and that you are calling to request a meeting with the Congressman/Senator
in many cases they will want you to meet with staff. This is fine, but insist on meeting with the District Director.
They may ask for a request for the meeting in writing.
A sample letter to request the meeting is attached
Talking points for the meeting are also attached

3. Write a letter (or deliver one at your meeting)

A sample letter for you to deliver at your meeting is attached.
Or, send this letter if you are unsuccessful in getting a meeting with the Member or staff
This letter explains what you are asking the Congressman/Senator to do (and this is in the talking points as well)
There are several critical points in time in the Congressional funding cycle. We may ask you to write at these different times with a slightly different message depending on the status of the legislation. Check our website for updates and newsample letters.

4. Ask others in your family or community to write

Members of Congress and their staff pay attention to volume
If they get multiple letters on this issue, they will pay attention
They can use the same sample letter

5. FOLLOW-UP – with staff

Call the staff you meet with back every 2 weeks or so to ask for an update on your request.
Staff will pay attention to a squeaky wheel

6. Write a letter to the editor of your local paper

To raise awareness for Rett Syndrome, consider writing a letter to the editor of your local paper.
A sample letter to the editor is attached.
Make sure you mention your local Congressman or Senator’s name and our request in your letter.

7. Send us a copy of your letters and any responses or feedback you get from Members of Congress so we can track our success.

Sample meeting request letter

May 15, 2010
The Honorable [Pete Sessions]
[1514 Longworth House Office Building]
Washington, DC [20515]

Dear [Representative Sessions]:

I am writing to request a meeting with you in your district office in ___[name location]__ during the July Congressional district work period. In particular, I am requesting the meeting with you to discuss a very important and personal matter – funding for research and activities to increase awareness of Rett syndrome. [If you will be bringing others with you mention that here]. My daughter, [name], has Rett syndrome, a rare and debilitating neurological disorder that was masked in our daughter until she was [age of onset of RTT in your daughter], when she went from a happy, typically developing child to one that is severely disabled, incapable of the smallest acts of independent daily living and unable to tell us her simplest needs.

Twenty years ago, no one had heard of Rett syndrome and parents were left to agonize about the cause of their seemingly normal daughter’s physical and mental deterioration. But then the International Rett Syndrome Foundation was founded and 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. And great progress has been made. In 2007, Dr. Adrian Bird’s lab heralded the reversal of Rett syndrome symptoms in mouse models. Our hope is to make that a reality in people.

While the Congress and the NIH in the past have initiated some funding for research into Rett syndrome, now is a critical time and we need you to add your voice to the fight for finding a cure to this long-overlooked disorder.

I am sensitive to the demands on your time and appreciate any time you can devote to this meeting. I want to convey to you first hand the exciting opportunities that are presenting themselves to allow us to advance the cause for Rett syndrome by leaps and bounds, not just baby steps.

As little as 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. It is imperative that we secure government support 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. Every diagnosis may lead us closer to solving the mystery of Rett syndrome for my daughter and generations of girls in the future.

I will follow up with your scheduler to try to secure a time for our meeting. In the mean time, if you would like to reach me, you can do so at __[give phone number and email address if possible]____.

I greatly appreciate your consideration of my request and I look forward to meeting with you.

Sincerely,

[name]

[mailing address and contact info]

Sample letter

May 30, 2010
The Honorable [Pete Sessions]
[1514 Longworth House Office Building]
Washington, DC [20515]

Dear [Representative Sessions]:

The House is currently considering the FY 2011 Appropriations bills. In particular, I am writing regarding the House Labor, Health and Human Services and Education (Labor/HHS) Appropriations bill which funds programs that are very important to me and concerns the well-being of my daughter, [Name]. [Name] has Rett syndrome, a rare and debilitating neurological disorder that was masked in our daughter until she was [age of onset of RS in your daughter], when she went from a happy, typically developing child to one that is severely disabled, incapable of the smallest acts of independent daily living and unable to tell us her simplest needs.

The Labor/HHS Appropriations bill funds many programs that benefit families living with Rett syndrome. But, in particular, this year, Congressman Steny Hoyer has requested $___?___ specifically for the Internatinal Rett Syndrome Foundation to aid in education and awareness for patients, health professionals, and the public regarding Rett syndrome (RTT). Congressman Hoyer’s request also includes language that will encourage the NIH to continue its focus on Rett Syndrome research. We urge you to write Chairman Obey and let him know of your support for IRSF and Congressman Hoyer’s request.

Until IRSF was founded, no one had heard of Rett syndrome. 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 the 1999 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. In 2007, research partially funded by IRSF, Dr. Adrian Bird reported the reversal of Rett syndrome symptoms in mice models. With this seminal discovery, IRSF has redoubled its efforts to increase awareness of the disorder.

IRSF’s honorary spokesperson, Ms. Julia Roberts, testified before the House Labor/HHS Appropriations Subcommittee in 2002 to plead for additional research funding. Word of her plea was internationally broadcast, bringing awareness of Rett syndrome from the halls of Congress into living rooms around the world. That year, Congress recommended that NIH create programs targeting research on Rett syndrome. As a result, outstanding breakthroughs have already occurred and the accelerated pace of research is likely to continue with continued Congressional interest in Rett syndrome. We know that by searching for treatments and cures to help [Name], the knowledge gained about Rett syndrome will unlock understanding for more common disorders whose genetic bases have yet to be discovered.

But now is a critical time. By building more awareness and educating the public and health professional about Rett Syndrome, more girls can be diagnosed and more can be learned at this critical moment in RTT research. Congressman Hoyer has requested the funding from the Public Health Improvement and Leadership account within the Centers for Disease Control, and this is well within that agency’s mission.

We know that there are many competing causes bidding for congressional attention. We write to you now to give voice to our girls with Rett syndrome constituency who cannot speak for themselves, but nonetheless add depth, meaning, and indomitable spirit that shapes the foundation of American values and concerns. Thank you in advance for your support of Rett syndrome as you consider the FY11 Appropriations bills.

Sincerely,

[Name]

[Address]

Meeting Talking Points
(you will have 30 minutes, at most)

Opening:

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
RTT is a neurological disorder seen almost exclusively in females.
It is usually caused by a mutation of the MECP2 gene on the X chromosome.
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.
A hallmark of RTT is repetitive hand movements that may become almost constant while awake.
Other features include seizures, irregular breathing, and curvature of the spine.
In 2007, symptoms of Rett syndrome were reversed in mouse models
Research can make a difference to provide care today and a cure tomorrow.

Why you are there:

Until IRSF was founded 23 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 and helped support research that determined Rett may be reversible.
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 has 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.

THE ASK:

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, Congressman Steny Hoyer has requested $___?___ 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.
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.
Chairman Obey is familiar with RTT – Actress Julia Roberts testified before his subcommittee in 2002 on behalf of RTT and funding for research.
Now is such a critical time for girls with RTT and their families.
This funding will truly help us care today, cure tomorrow. It will assist families in everyday living – by providing critical information. It will also help raise awareness among health professionals, which is critical for our research efforts. Every diagnosis gets us potentially closer to a cure.

Get a commitment:

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

Closing:

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