In This Issue

Dear Rett syndrome community,

I hope all of you are having a good summer. The staff and volunteers of IRSF have been working over the summer months to prepare a full calendar of events and activities for this fall event season in order to raise awareness and funds for Rett syndrome.

The Clint Black Public Service Campaign, IRSF’s major public awareness initiative, is on track. We expect to distribute 15, 30 and 60 second TV and radio PSA’s to over 210 viewing areas in the United States. Virtually every community will be contacted. The launch has been planned so that the ads are played during October Rett Syndrome Awareness Month. This is a great opportunity for the community to increase awareness of Rett syndrome as well as help IRSF connect with new families and supporters. It is a community wide project and everyone can participate by using the online tools we will provide to contact local stations. Please make yourself available to your local radio and TV stations for interviews. We will kick off October Rett Syndrome Awareness Month in the northeast with the 2nd Rally for Rett-THE TODAY SHOW on September 30th.

There is a full menu of activities this fall in advocacy and fundraising. The Family Advisory Board is contacting the governor’s office in each state to secure a proclamation establishing October as Rett Syndrome Awareness Month. This successful project has resulted in close to 30 proclamations in years past and we look forward to seeing many more this fall.

Events season is in full swing; there is a jam-packed calendar of Rett syndrome Strollathons planned throughout the country; the Ohio/Kentucky/Indiana Strollathon is one of the oldest and largest strolls. It will be held on September 17th. Also, Clint Black will perform a live concert in Houston as part of the Spending Time Ending Rett Texas stroll-fishing-golf event on October 20th. Boston will hold its 11th annual Festival of Food and Wine event on October 20th. There are special events planned such as HER Night, HER Knight, The Phantom Tea and The Care and Cure Cafe all of which focus on October Rett Syndrome Awareness Month. There are special “how-to” tools online for fundraising events of all sizes available. Check the IRSF calendar on the website and speak to your regional representatives for events happening in your area.

Rett syndrome fundraisers aren’t the only thing growing. Scientists working on Rett syndrome never stop their work; the Research Review Committee will convene this fall at the Kennedy Krieger Institute to review a second round of research grants to be awarded by IRSF. Also, IRSF will co-sponsor a scientific workshop with the National Institute of Neurological Disorders and Stroke this September. The workshop will look at symptoms of Rett syndrome in mice that are found in people. The goal is to standardize pre-clinical animal studies so that all RTT investigators approach the problem the same way using a standard method of measurements to monitor change and improvements in symptoms. This kind of work is vital to moving clinical trials forward in Rett syndrome. The Natural History Study also has a full calendar of traveling clinics this fall. This project has been essential to providing uniform standards of care to the girls as well as gathering essential data on Rett syndrome.

The backdrop to all of these events and activities is the feeling, based on facts and expectations, that we are going to have an exciting year in research. We expect to see major advances toward a new round of clinical trials to reverse symptoms as well as significant advances in scientific information to understand Rett syndrome.

We look forward to working together this fall and winter on fundraising, family support and advocacy. We will take positive steps forward together to make life better for families and children with Rett syndrome.


Stephen Bajardi
Executive Director
IRSF

Research

Researchers who study Rett syndrome are increasingly identifying new underlying biological pathways that contribute to the cause of and to the symptoms of the disease. The researchers believe that a chemical or biological compound that influences such a biological pathway (or disease mechanism) that they are studying may have an important effect on Rett syndrome. Thus, understanding these disease mechanisms is a starting point for drug discovery.

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We are happy to report that IRSF funded investigator Dr. Alan Kozikowski from the Department of Medicinal Chemistry at the University of Illinois-Chicago has recently published work in Nature Medicine that a compound in the SMART library demonstrates curative effects in a mouse model of the peripheral neuropathy disorder called the Charcot-Marie-Tooth (CMT). CMT is a disorder of the peripheral nervous system and is characterized by a slowly progressive degeneration of the muscles of the limbs and extremities. Although the complete spectrum of symptoms associated with CMT differs from those of Rett syndrome (RTT), these two disorders do share some commonalities at the cellular level, where the neurons are not functioning normally. Within the neurons associated with CMT or RTT, there is evidence that the transport of essential cellular components is inefficient, and this results in impaired neuronal cell communication.

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HDAC6 inhibitors reverse axonal loss in a mouse model of mutant HSPB1–induced Charcot-Marie-Tooth disease
Constantin d’Ydewalle, Jyothsna Krishnan, Driss M Chiheb, Philip Van Damme, Joy Irobi, Alan P Kozikowski, Pieter Vanden Berghe, Vincent Timmerman, Wim Robberecht, & Ludo Van Den Bosch

Link to Abstract
Link to Article

Happenings

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Yes. Everyone with a Facebook log in can participate in the voting process.

Unfortunately, this voting competition is run solely on Facebook. We are aware that not everyone utilizes Facebook, but hope that you might still support us by spreading the word via email, phone, etc. to all of your friends and family who do use Facebook and ask them to vote daily. You can still be an key part of this competition just by vote-raising for IRSF.

Advocacy Resource Websites for U.S. Families, from IRSF BOD member Karen Nussle

U.S. families often ask us about how they can find reliable and credible information about what’s going on in Washington. We know you are interested and powerful advocates and we want to help you keep informed. When you don’t live in DC and you don’t regularly follow all the activity on Capitol Hill, it’s hard to keep track of what might be happening with things like Medicaid funding, Education Reform, NIH funding and the wide variety of issues we care about, and want to be sure we are vocal about on behalf of our girls. In an attempt to help answer this question we did a little research and wanted to pass on what we found. Unfortunately there are no perfect sites. But for general information, we recommend that you check out and track the following sites:

www.ucp.org/public-policy
www.researchamerica.org/advocacy
www.thearc.org

All of these organizations (above) are well funded national organizations. So they have staff dedicated to tracking and updating legislative issues and they will be up to speed on the big issues. Now each of them has their own agenda, so we all need to be smart consumers – the agendas of these organizations may not exactly align with Rett syndrome and our families’ needs. But in general all of these sites have good solid information.

I also found the site below. While the site looks primitive, they have compiled some very good resources. I haven’t had a chance to check out all of the links they recommend, and clearly they have a California focus. But I was impressed by the fact that they are trying to do here exactly what we are trying to do -- create a clearing house of information for families.

www.supportforfamilies.org/legislative/alerts.html
www.supportforfamilies.org/legislative/links.html

We hope you find this is helpful. Let us know if you have questions about anything you find on these sites or if we can provide additional information. We’ll keep looking for the best resources and pass them on when we find them.

Alabama Advocacy Success Story

Dana Sutton, Southeastern Rett Syndrome Association (SRSA) Board member, reports that as a result of their efforts, the State of Alabama Governor’s Office on Disabilities has now listed IRSF, SRSA, and RettConnect as resource links at good.alabama.gov/resourcelinks.htm. New families that have a child diagnosed with Rett syndrome, or who move to Alabama, now have access to information for all levels of support at their fingertips. She says IRSF benefits families by providing information on Rett syndrome, names of their state regional representative, information on the latest research, and also fundraising efforts to further research. SRSA directs families in how they can become involved in these fundraising efforts and provide connections to local support, and Alabama Rett Connect directs families to local institutional supports, with all roads pointing back to IRSF. This is a win-win situation for the families in Alabama. Their hope is that this effort provides a crucial step towards building up support networks in the state, and continues building fundraising efforts for research.

Mrs. Sutton says that most states have these Resource pages mandated by law, though some are better than others as far as listings and directing consumers to links. She emailed, and personally called the contact person for Alabama's site and asked for a listing of the International Rett Syndrome Foundation, the Southeastern Rett Syndrome Alliance, and Alabama Rett Connect, and they were more than happy to list these organizations.

They also asked their state Developmental Council for a listing of IRSF on their web site, but they responded that the board would have to vote on this. All states have a DD Council website for listings.

IRSF congratulates these women for taking the time to simply investigate their state’s website, and request the addition of resource links to IRSF. We encourage you to pursue this in your own state, so that no family is left alone on their journey with Rett syndrome

Clinics!

Featured Angel: Jillian Endres

Hi! My name is Jillian Endres but almost everyone calls me Jilly. I am 8 ½ years old and I was diagnosed with Rett syndrome at 17 months. I attend an amazing school where I am integrated into regular classes such as gym, art, music and library—and this year I will be in second grade! My main classroom is a therapy-based classroom so even when I am doing something fun, my teachers and therapists turn it into some form of therapy. I feel very blessed to “have it all” at school and I know my parents feel this way too!

Learn more about Jilly and her family...

Start the School Year off Right

By Jennifer Endres, Family Resource Manager, IRSF

Another summer has passed and some of us are already back in school while others are eagerly awaiting the first day. The beginning of a new year is exciting but can also be stressful for parents and caregivers of children with Rett syndrome while they prepare for a smooth and successful transition. As the mother of a daughter with Rett syndrome and also a former special education and regular education teacher, I wanted to use my experiences to help you get your child’s school year started off on the right track.

• Educate Peers
• Educate Educators
• Check Equipment
• Important Tips

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Take a bold action this year and help us fight for our girls and women fighting Rett syndrome! Set your 2011 resolution NOW to get involved and take part. Every day our Rett angels face the world with a brave face as they patiently wait for us to find treatments and a cure. IRSF has hit the ground running this year – make this the year you get active and give hope to thousands. Take part in a local IRSF Strollathon, host your own IRSF Signature Event, or create an online fundraising page! Click here for an A-Z list of easy fundraising ideas to get your office, kid’s school or your community on board with fundraising for your Rett angel! IRSF makes it easy to get involved.

Your help is our hope. Your help is their hope.

Each Month IRSF will Provide you with a Fundraising Idea!

These ideas can be used throughout the year to keep the fundraising going and keep your community involved! Many of the Fundraisers we are going to share can be put together fairly quickly and are easy to do!

Casino Night
Do you have friends and family that play poker or like to go to casinos? Then why not host a “Casino Night for Rett”! A Casino Night fundraiser offers several ways for donations including silent and live auctions, raffles, poker tournaments, sponsorship opportunities, ticket sales, and even a cash bar. Include a certain amount of gambling tokens or play money with each ticket to get your guests playing. Be prepared to sell a lot more during the event. If you have great prizes, your guests will keep gambling! Click here for a how to sheet to help you plan your Casino Night for Rett! Give yourself at least a few months to plan an event like this. Check out this flier that IRSF created for a Casino Night that was held this winter in Virginia!