September 13, 2010



The Rett Gazette

The most recent edition of the IRSF Rett Gazette will be hitting mailboxes any day now! Be on the look out!

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Vera Zvonareva

IRSF would like to Congratulate Rett supporter and Tennis star, Vera Zvonareva, for making it to the U.S. Open Finals this past weekend. 2010 Wimbledon finalist, Vera Zvonareva, was defeated by Kim Clijsters who successfully defended her title. Both players won great semifinal matches to get there. Zvonareva stunned finals favorite Caroline Wozniacki and Kaia Kanepi earlier in the tournament to earn her place in the Finals on Saturday. Though Vera was defeated in the Finals, she played her heart out to make it as far as she did.

Vera, an avid Rett syndrome supporter, attended a special Meet and Greet with a few local girls with Rett syndrome earlier this summer during her time here while competing in the Western Southern Financial Group Masters and Women’s Open.

Zvonareva serves as an international ambassador for Rett syndrome and spreads awareness around the world when she travels to tournaments. She became familiar with Rett syndrome after her best friend's daughter was diagnosed.

IRSF would like to express our unwavering support for Vera in her future competitions! Good luck Vera and thank you!

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Pepsi Refresh Project:

Click Here to Vote Now!


IRSF is still in 1st place in the Pepsi Refresh Project. Though, as we all know, it only takes a few votes to knock us from the top. Let the taste of a victory from August motivate us to do what it takes to secure a win for September. This $250K grant could mean $500K for Rett syndrome due to a generous matching gift grant from the Pioneer Fund of Colorado.

Research has shown that symptoms of Rett syndrome can be reversed in a mouse model. IRSF is targeting research funds to discover, develop and test new drugs to treat and reverse Rett syndrome. The research is too promising NOT to fight for this grant!

Now is the time to get involved. 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 can fight this TOGETHER; TOGETHER WE ARE BETTER. We need your help to expand the scope and awareness of this very important competition. It is up to you to decide how you wish to participate. Think about what best fits your life right now. We are challenging families from all over to band together to get involved or strengthen your involvement in our fight for a cure for Rett syndrome! 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?

Become an official Pepsi Rett Hero: Read daily posts and tips by the PEP-C team and the Rett community about the Pepsi Project. Let us know if you will be an official Pepsi Rett Hero in your community the rest of September. That means you will do what it takes to rally for mass votes and awareness in schools, businesses, restaurants, grocery stores, sporting events, etc. and we will support you with flyers, stickers, awareness cards and talking points to secure permission from management/administrators/business owners, media outreach, and more. You will also hear inspirational success stories from fellow heroes. So much is happening across the country wont you be a part of it? Become a Rett hero today! Click on the box that says "Request Membership" (or something similar to this) next to the Group name Pepsi Rett Heroes

Don’t belong to Facebook yet? Consider signing up now, or if you prefer to stick with email, go here and ask to join this Yahoo group led by Lisa Higgins!

Alliances: IRSF is continuing to form alliance partnerships with good kids and rare disease like-minded partners. Here is the link to vote for IRSF and our partners http://pep.si/bR9dvf. Please bookmark, and visit CCK on Facebook, especially if you live in Kentucky where the camp is located – maybe you can do some shared local Vote-Raising activities? CureJM and other Kids2Win Pepsi winners are continuing to support IRSF and vote for us. Please encourage and thank them on their Facebook pages
Vote for our Current Partners
1. Rett
2. Rare Disease Network
3. CMV
4. Center for Courageous Kids
5. 1p36 Deletion Support
6. Lake Reba
7. National Inclusion

IRSF offers full service support. Just call 1-800-818-7388 for assistance regarding any technical, login, messaging, awareness building or educational inquiries. IRSF will email/mail you materials such as flyers, stickers, awareness cards, etc. to pass around. Email your questions & ideas to lhayden@rettsyndrome.org.

Status Update: IRSF received word from the head of Consumer Relations for the entire Pepsi Refresh contest concerning a few details. They have officially assured us that the close of August voting was very close, and Hannah’s Hope and CureJM simply had the most votes at the stroke of midnight. There was no detection or discounting of invalid votes at the end. Site audits are conducted daily throughout the entire month to ensure fair voting practices. This is great news for us! Now we know to vote hard and strong up until the very last minute of midnight eastern Sept 30, and never get comfortable or take our leaderboard position for granted. FYI: Votes are cumulative from the first day of the month until the last day of the month, so let’s get as much of a lead as we can and hold it! ALSO they have committed to clearing all comments made prior to Sept 1 on our Idea page www.refresheverything.com/rettresearchtoreality in the next 2 days so our page should stop locking up. LASTLY, please let pnues@rettsyndrome.org know the minute something seems to not work. They are not introducing anything “new” this month (like the Gulf project) or ways to vote (like when they added texting in August) so hopefully their servers will be more stable.

Motivational Quote of the Day:
"From our perspective, it was nothing for us to try to raise awareness of this voting issue and a few keystrokes per day compared to what our angels have to go through each and every day and for much longer than three months. As far as our Tiff's family is concerned, we are willing to continue the fight as long as Pepsi is willing to be gracious enough to donate and there are friends like you who are willing to continue the fight."
- RTT parent

How can you Share the message? – visit www.rettsyndrome.org/pepsi to download awareness materials & to learn more about how you can get involved TODAY!

Click Here to sign up for our Daily Email Reminders and your chance to WIN an iPad!Sign up for the daily email reminders and vote for IRSF every day! If IRSF wins the $250K, your name and email address will be entered into a drawing for a chance to win an iPad!

Check out how one Rett family gained awareness for the project and Rett syndrome!

Vote All 3 Ways Daily:
  1. Vote with your Pepsi Refresh account.
  2. Vote with your Facebook account!
  3. Vote via Text: Text 100842 to Pepsi (73774)

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October Rett Syndrome Awareness Month National Conference Call

IRSF hosted an open national conference call in honor of October Rett Syndrome Awareness Month (ORSAM) for families around the country to learn how to make this coming October the best yet. Speakers shared motivating stories, tips on how to get started and how IRSF is able to support you in the activity that best fits you and your family. Listen to the audio recordings of conference calls (approximately 1 hour each) from 2009 and 2010 to get ideas on how YOU can make this ORSAM amazing!

2010's audio recording
2009's audio recording
Topics Covered:
IRSF NETWORK FUNDRAISING ACTIVITIES
STATE PROCLAMATIONS
MERCHANDISE SALE
ORSAM AWARENESS MATERIALS
TEN THINGS YOU CAN DO FOR OCTOBER AWARENESS MONTH
LESSONS LEARNED FROM FUNDRAISING
HOW IRSF CAN ASSIST WITH OCTOBER AWARENESS/FUNDRAISING

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IRSF Networks

IRSF offers various special interest support networks which provide the support needed to understand and overcome the unique obstacles that having a child with Rett syndrome or a MECP2 Mutation brings to a family and in turn the members of these networks will help their family understand and overcome as well.

Join one of our support networks today!
Questions?
Contact Jennifer Endres at jendres@rettsyndrome.org or call 508-362-2220

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Rett Parent Recognized as Tennessee Mother of the Year

Patricia Womac of Athens, TN is being honored as a 2010 Mother of the Year by the Tennessee Justice Center (TJC). The award is in recognition of her persistence in battling to obtain medical services for her daughter and for her extraordinary commitment to the healthcare of all children and families.

Ms. Womac’s daughter, seven-year-old Hannah, suffers from Rett Syndrome, a rare and devastating disorder of the nervous system that renders her incontinent and unable to speak or walk on her own. Rett Syndrome occurs mostly in girls and is occurs in one in every 10,000 - 23,000 female births. Due to these conditions, plus difficulty breathing and frequent seizures, Hannah receives nursing care through TennCare, Tennessee’s Medicaid program. Even with nurses, Hannah’s mother cares for her full-time – lifting, bathing, and feeding Hannah and fighting to make sure she gets what she needs.

Hannah’s caregivers take joy in her small pleasures and accomplishments. She loves to watch cartoons including “Miss Spider’s Sunny Patch Kids” – a show about a family of bugs who live in the Hollow Tree. Hannah’s mom thinks that Hannah is drawn to the way the characters speak and their voices. She also enjoys listening and moving to country music.

Last fall, Ms. Womac received a notice from the TennCare HMO saying that it would no longer cover the nursing care Hannah needs to be safe. The HMO called Hannah’s doctor and pressured him into reducing his order for nursing. Then they cut Hannah’s care. When Ms. Womac learned about the reduction, she immediately filed a TennCare appeal to keep her daughter’s home health hours. Ms. Womac called Tennessee Justice Center, exasperated, and asked for help. She explained that every few months, Hannah’s HMO tries to reduce her nursing. Each time, Ms. Womac must go to court and each time, the judge orders that Hannah’s needed home health care be provided. To stop this exhausting cycle, TJC wrote a letter to the state. The state’s lawyers wrote back, agreeing, and Hannah’s nursing services have continued.

Ms. Womac’s struggles to provide care for her medically fragile daughter are ongoing, as is TJC’s advocacy. In January 2010, Ms. Womac called TJC because she needed help getting Hannah’s wheelchair fixed. The repair company picked up the broken chair, but provided the family with no temporary replacement. Hannah was left for a week and a half without a wheelchair, causing her to miss a doctor’s appointment since Ms. Womac had no way to get her there. When the chair did come back, it was missing head and arm supports. TJC wrote two letters to the state’s TennCare attorneys and got Hannah the safe wheelchair she needs.

Ms. Womac’s tenacious dedication to her daughter is helping Hannah live the best life she can. We honor Ms. Womac as a Mother of the Year!

The Tennessee Justice Center (TJC) is a non-profit public interest law and advocacy firm serving Tennessee’s families. It gives priority to policy issues and civil cases in which the most basic necessities of life are at stake and where advocacy can benefit needy families statewide. TJC works to empower its clients by holding government accountable for its policies and actions. TJC was established in 1996 and is located at 301 Charlotte Avenue, Nashville, TN. For additional information about the Tennessee Justice Center and its services, visit www.tnjustice.org or call 615-255-0331.

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Your Online Vote can help our friends the Rocky Mountain Rett Association (RMRA)

Sears is giving away up to a BILLION reward points (value $1,000,000) to the winner of their online video contest. The Rocky Mountain Rett Association has submitted a video and will be awarded 75% of the prize with the help of your votes (the other 25% will go to St. Jude Children’s Research Hospital). The Sears competition is primarily for Sears points, but Sears will also payout 30% of the value of the points in cash. It is their intent to use the cash portion to help fund the start of a Rett Clinic in Colorado with pediatric neurologist Dr. Tim Benke, and use the balance of the points to purchase much needed items for the clinic and to support Rett families in need. “It is our intent to find the best use of these proceeds to help as many people in the Rett World as possible.”

How it works: Please follow the link below and vote for the video once per day through October 4th. The web site is a bit challenging; please persevere. They need to finish in the top 20 to get to the final voting stage. Once in the final voting stage, the finalists will compete for a win in October. Please support RMRA!
  • The winner of the contest will get up to one billion reward points (worth one million dollars) divided as follows:
    • 1/4 to St. Jude Children’s Research Hospital (Sears’ corporate charity)
    • 1/4 to Rocky Mountain Rett Association
    • 1/2 to be donated to Rett Organizations through RMRA
    • The 1/2 will be grossed up by 30% to cover taxes; we intend this cash to be donated
  • The total prize depends on the number of videos submitted. Right now this is approximately $540k.
  • The top twenty videos as of Oct 5 will be entered in the final voting. This is our immediate objective.
  • How to vote:
    • Go to the RMRA video at www.tinyurl.com/searsvideo
    • Enter your email address and the code displayed
    • The first time you vote, the system will send an email to confirm your address; you must respond to the link in the email to confirm your email and complete your first vote*
    • Subsequent voting is very simple. No login is required and you can go directly to the above link and input the email address and code. Each person / email can vote up to once per day
*Note: Please contact Todd Benjamin at webmaster@corett.org for any questions or assistance you may have regarding this competition.

* We have had some problems in getting the confirmation email. The system sometimes seems to ignore some addresses. We recommend using an alternative address. The confirmation email does not arrive immediately and may take up to 24 hours.

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Event Calendar

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Note:

Please Update Your Contact Information with IRSF

Please contact Lisa Hayden at lhayden@rettsyndrome.org or by calling 1-800-818-7388 to easily and quickly update your information.

Please send ALL MAIL to 4600 Devitt Drive Cincinnati, OH 45246.
Please send ALL DONATIONS to P.O. Box 706143 Cincinnati, OH 45270-6143.


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