October 18, 2010
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The Combined Federal Campaign IRSF received over $47,000 in pledges in the 2010 CFC campaign and the 2011 campaign continues through November. Please share our CFC Code Number: 11046 with family and friends. If you know of a CFC Fair in your area or workplace and are able to secure table space, the foundation can supply you with materials for distribution. Please call the office at 1-800-818-7388 for materials. United Way United Way campaigns continue through the fall – While we don’t have a United Way code, many UWs will accept donor directed donations. Just write our EIN – 31-1682518 on the donor designation line – as well as our name and address if there is room. October is Rett Syndrome Awareness Month October is our time for action! Rett syndrome has had an immeasurable impact on our children, our families and our community. It is the leading cause of severe impairment in girls yet the general public still doesn’t know about it. Let’s change this. We need the world to embrace our children and help us Turn Research into Reality for thousands of angels with Rett syndrome. Visit the ORSAM page to learn more about how YOU can make this ORSAM the best yet! October Awareness Sale Get YOUR new Rett syndrome awareness gear TODAY! Use the coupon code, "ORSAM" during the month of October to receive a 20% discount off some of your favorite IRSF merchandise! Update Your Contact Information with IRSF Contact Lisa Hayden at lhayden@rettsyndrome.org or by calling 1-800-818-7388 to easily and quickly update your information. EDUCATE YOURSELF at the IRSF Annual Family Conference Memorial Day Weekend, May 27-30, 2011* The Boston Park Plaza Hotel Boston, MA www.bostonparkplaza.com Donations: Does your company have a Matching Gift Program? These extra donations go a long way. Please send any matching gift forms to Cara Leighton at cleighton@rettsyndrome.org or by fax at 513-874-3020 Please send ALL DONATIONS to P.O. Box 706143 Cincinnati, OH 45270-6143. Mail: Please send ALL MAIL to 4600 Devitt Drive Cincinnati, OH 45246. Event Calendar |
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Become a Rett Syndrome Advocate
Start Your Letter Writing Today!
October is our time to rally the community to push the Rett syndrome advocacy agenda in Washington DC. Let’s take advantage of our recent Pepsi success and increase our advocacy efforts to keep our cause in the minds of our elected federal representatives. We NEED YOUR HELP to secure $180,000 in funding from the FY2011 Labor--HHS-Education Appropriations committee. Your voice has power and influence!
Send a letter TODAY!
Just click here to register or login. The website will automatically tell you the name of your elected federal representatives!
Governor Proclamations
In support of October Awareness Month, Governors in several states honor our efforts by signing proclamations declaring October to be Rett Syndrome Awareness Month in their states. Proclamations are meant to be used to raise awareness within a state, facilitate news media coverage and to support local fundraisers and education efforts. IRSF encourages you to incorporate them when appropriate into your advocacy efforts.
Researchers use stem cells to create models for 2 diseases
Scientists at the University of Connecticut were able to develop genetic models of Prader-Willi Syndrome and Angelman Syndrome using induced pluripotent stem cells made from skin cells of patients with the diseases. A stem cell expert said the models could be used to test various treatments for the diseases. (10/11)
2010 Phantom Tea and The Care and Cure Café
Host a virtual fundraiser with our annual Phantom Tea Fundraiser or our online Care and Cure Café! These virtual fundraisers are fun and easy ways to generate donations in honor of your loved one with Rett syndrome without even leaving the comfort of your own home! Just contact jgrammer@rettsyndrome.org to get started with the virtual fundraiser of your choice today!
Silent Angels by Ayme Sanchez
IRSF is proud to announce the official release of the new song, Silent Angels, by Rett supporter and singer/songwriter Ayme Sanchez. Ayme co-wrote the song Silent Angels in honor of our Rett angels.
"Silent Angels is about holding on to hope. It's about believing in possibility no matter what your challenges may be. It's about breaking down barriers. The impossible can very much become possible. The powers of belief and faith can move mountains and create change as long as you never give up." – Ayme Sanchez
YOU can Power the Fight for a Cure!
Support K.C. Byers in His Rett Ride Across America
K.C. Byers, a rett dad from Alabama and a 54 year old cancer survivor, is raising awareness and funds for Rett syndrome in a ride across America. K.C. began his bike ride for Rett in Florida on September 25th and plans to arrive in Santa Monica, California no later than October 31st! K.C., riding approximately 100 miles a day, is traveling across the southern portion of the country. This amazing journey just so happens to be perfectly times during Rett Syndrome Awareness Month! Help K.C. and his team raise funds and awareness for OUR SILENT ANGELS! Cheer him on as he pedals his way a long the ride for Rett!
Get Updates Sent to your phone! Text the message "RETTRIDE" to the number 90210.
Learn more about K.C.’s ride & visit http://www.RettRideAcrossAmerica.com
Pepsi Refresh Project
Rett syndrome has 2 ideas competing in the Pepsi Refresh Project. Give your support this month to these projects as well as the "Help Our Kids" alliance!
Support IRSF and the Help Our Kids by voting all 3 ways daily for each idea!
Visit www.rettsyndrome.org/pepsi to learn more.
"Silent Angels is about holding on to hope. It's about believing in possibility no matter what your challenges may be. It's about breaking down barriers. The impossible can very much become possible. The powers of belief and faith can move mountains and create change as long as you never give up." – Ayme Sanchez
Get Updates Sent to your phone! Text the message "RETTRIDE" to the number 90210.
Learn more about K.C.’s ride & visit http://www.RettRideAcrossAmerica.com
Support IRSF and the Help Our Kids by voting all 3 ways daily for each idea!
Visit www.rettsyndrome.org/pepsi to learn more.
| 1. Vote with your Pepsi Refresh account. | 2. Vote with your Facebook account! Vote For Rett Clinics Vote CDKL5 Research |
3. Vote via Text: Text 103134 to 73774 for Rett Clinics; Text 102973 to 73774 for Cure CDKL5
Note: Standard text messaging rates apply |
A Cookbook to Benefit Rett Syndrome
Check out this great cookbook in which all proceeds will be donated to IRSF in support of funding research for Rett syndrome. Robin Diamond, parent to Abby, who suffers from Rett syndrome, is a member of the book club responsible for creating this cook book.
Learn more about this cook book and how you can get your own!
Help the Rocky Mountain Rett Association (RMRA) Win $500K for Rett Syndrome
Vote Today for the Rett Syndrome Video and help win $500,000 for Rett Syndrome in the Sears Video Contest finals. Vote daily through November 3.
For more information see www.corett.org.
Learn more!
IRSF Family Advisory Board - APPLY NOW!
Apply for the IRSF Family Advisory Board by November 22, 2010.
If you are an immediate or extended family member of a person with Rett syndrome we would like you to consider applying for inclusion on the Family Advisory Board (“FAB”). FAB is the only part of the IRSF organization made up of family members that has a direct affiliation, communication channel, and influence with the IRSF board. We have conference calls approximately every five weeks for an hour, and we have working committees that meet by conference call when necessary. We have an advisory role and a working role.
Join us, and help us lay a foundation that is solid for those to come later. Help us make this time – now – the best ever for IRSF and contribute positively for those families dealing with Rett Syndrome. Best wishes to all, and thank you for your consideration.
Clifford L. Fry
Chairman, FAB
There are several openings on FAB for the period beginning January 1, 2011. Please consider applying.
Click here for more details and to download an application.
The deadline is November 22, 2010. Contact Paige Nues at pnues@rettsyndrome.org with questions.
STROLLATHON SEASON IS WRAPPING UP! It’s not too late to get involved!
This year was the largest year for Strollathons – 20 across the country! Was there one happening right near YOUR community? Did you get involved? If not, it is not too late! Because of our new online fundraising tool – First Giving – the fundraising continues beyond the actual event! You can create your very own fundraising page and help the Strollathon near YOU be the most successful this year! The Strollathon Program, IRSF’s signature event, has raised over $2 Million each year to fund cutting edge research and has propelled IRSF to where we stand today – so close to finding treatments and a cure for Rett syndrome.
We can’t do this alone – we need you, your family and your community to join us in our fight for a cure for all the girls and women battling Rett syndrome. We are challenging families from all over to create Strollathon Teams for their Rett angels, plan a smaller event in your area or just participate virtually by hosting an online fundraiser at www.firstgiving.com/rettsyndrome!
Why Fundraise? Why the Strollathon? See what IRSF Family Advisory Board Member Mickie McCool says Fundraising for IRSF means to her!
Want to participate, but cannot attend a Strollathon? Consider participating virtually through our First Giving Strollathon Pages – to find the link for the event near you go to www.rettsyndrome.org and click on "Strollathon Donate Now".
Your help is our hope. It is up to you to decide how you wish to participate. Think about what best fits your life right now. We hope this will be the year you will become involved—or take part again! We have won many battles up to this point, but there is still one very important one we must conquer. Won’t you join the fight?
Regional Representative Program - serving families across the country
Have you gotten to know your Regional Rep? Click here to view the current list of Regional Reps around the country. This team of dedicated and compassionate people is ready to assist you in many ways—emotional support, information on programs and services, advice on how to get involved in your community or if you simply wish to talk…they are waiting to hear from you!
IRSF Networks
NEW The Educator’s Network: If you are working with or have worked with a student with Rett syndrome, we want to hear from you! If you are the parent of a child with Rett syndrome, please let your child’s teachers and therapists know about this newly established network! Professionals will be able to communicate through various social media outlets as well as participate in informational and educational conference calls, custom planned depending on the needs and interests of those involved. Registered teachers and therapists can participate at the level that is right for them but can be assured there is a sounding board and others available for questions, brainstorming and sharing of ideas. Register today by emailing your name and information to jendres@rettsyndrome.org.
Join one of our many support networks today!
- NEW: The Educator’s Network – Email jendres@rettsyndrome.org to join.
- The Parents of Males with MECP2 Mutations Network
- The Dads Network
- The Grandparents Network
- The Single Parents Network
Please contact Jennifer Endres if you have questions about any of our support networks! jendres@rettsyndrome.org
“Difficulties strengthen the mind, as well as labor does the body.”
~ Seneca
Join one of our many support networks today!
- NEW: The Educator’s Network – Email jendres@rettsyndrome.org to join.
- The Parents of Males with MECP2 Mutations Network
- The Dads Network
- The Grandparents Network
- The Single Parents Network
Please contact Jennifer Endres if you have questions about any of our support networks! jendres@rettsyndrome.org