September 20, 2010

Induced Pluripotent Stem Cell Retain An Inactivated X Chromosome

The article describes an important landmark study, since it suggests that human skin cells that are reprogrammed into iPS cells retain their X chromosome activation status unlike mouse skin cells, in which the inactive X chromosome becomes reactivated. This non-random pattern of X chromosome inactivation found in iPS cell lines has implications for disease modeling and drug screening for X chromosome-linked diseases such as Rett syndrome, it could also be exploited in some form for other diseases of the nervous system where cell transplantation might be a viable option at some point in the future.

Senior author of the study was Dr. Kathrin Plath a scientist with the Eli and Edythe Broad Center of Regenerative Medicine and Stem Cell Research at UCLA.

Read more...

STROLLATHON SEASON IS UPON US ONCE AGAIN! Get into it! Find an event near you!

As we get into the heart of fall with October Awareness Month approaching, many families across the country are gearing up for the Strollathon happening in or around their community! IRSF and dedicated volunteers all over have increased the number of Strollathons from 15 last year to over 20! The Strollathon, IRSF’s signature event is a not only a hope-filled day with fun family entertainment, refreshments and mingling, it’s a chance to bring together all the families affected by Rett syndrome coast to coast. The Strollathon program 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.

You may have participated before or maybe this is your first year, either way, this is the year to get involved! We can’t do this alone – we need you, your family and your community to join us in our fight to find a cure for all the girls and women battling Rett syndrome. We are challenging families from all to create a Strollathon Team or 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! If each family and their teams of friends, family and neighbors committed to raising at least $2,000 can you imagine the difference we could make?!

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? For those families not able to attend a Strollathon in your state, you could 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”. You can also participate by creating a smaller “wrap around event.” Wrap around events are crucial in helping to increase revenue for Strollathons. IRSF can provide you with a list of wrap around event ideas that will be easy, fun and lucrative!

Here is a testimonial from a mom in Ohio who hosts a smaller wrap-around event each year to support the Cincinnati Tri-State Strollathon:

"Last year was the first year of our 'mini-stroll.' We had come to the Cincinnati stroll for a couple of years and thought maybe we could do something closer to home to help raise awareness and money. Our Allie was 7 then, and we had lots of people who supported us and wanted to be involved, but Cincinnati is 3 hours away for us and not easy for our friends and family to get there.

Our church decided that they wanted to put it together, so we had lots of help, but it was very easy to do. We decided on a date and secured a shelter at our local park. Jenni Grammer was so great about sending pamphlets to pass out and banners to hang for the event. Church members volunteered to make cookies and donate water bottles and punch. We made posters that each had a fact about RS and put them on stakes. Jenni also sent collection envelopes so that people could collect donations before the event.

The day of the stroll, we put up the posters along the route we would be walking and set up a table for cookies and drinks. We had a place for donations and collection envelopes with someone in charge of that area. Everyone met at the shelter and our pastor offered a prayer before we began our walk. We had over 100 people there and raised just over $5,000.00!! We even had another little RS girl attend! It was such a great event we are definitely doing it again this year!"

- Traci, Columbus, OH

Every Strollathon across the country is for everyone fighting Rett syndrome. We can fight this TOGETHER; TOGETHER WE ARE BETTER, but we need your help to expand the scope and awareness of these very important events.

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?

Pepsi Refresh Project:

Click Here to Vote Now!

IRSF is still in 1st place in the Pepsi Refresh Project. This $250K grant could mean $500K for Rett syndrome due to a generous matching gift grant. 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!

The competition is getting fierce! There is the Progressive Slate group of 16 ideas that have formed a group known as the Progressive Slate. This group has some very serious growth potential behind it. Some other serious competitors are The Skip Program, Cystic Fibrosis and Arms Wide Open Childhood Cancer Foundation. These ideas are huge organizations that haven’t had to overcome the awareness obstacle that we, as a rare disorder, have faced throughout this competition. We have shown real perseverance by hanging on to a number one ranking over these incredibly powerful causes for this long but NOW we NEED your help to do what you can to accrue more and more votes every day!

Text Votes: Please note that IRSF has received official word from Pepsi that if you receive the “error” message while attempting to text your vote, your vote was not counted and you should try again!

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!

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
8. Horses for Handicapped

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.

Motivational Quote of the Day:
"The cost/ benefit of our collective effort is high...the risk /reward relationship is low...let's keep after it...it ain't over til the 'fat lady sings' and I haven't heard her yet!!!"
- Rett Supporter, Dave Clements

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 right from our Pop-up!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 some Rett families have gained awareness for the project and Rett syndrome!
News story from Leah's Wishing Well
News story from Tonya Hannah, parent SC
News Story submitted by Dave Clements, Kevin Black and Kenna Seiler
News story from Warren, PA

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)

October Awareness Month is Right Around the Corner!

October Rett Syndrome Awareness Month (ORSAM) is just a few short weeks away! I hope that everyone is gearing up for our event season with all of the great happenings that take place in support of October Rett Syndrome Awareness Month! IRSF hosted a conference call in honor of ORSAM in an effort to make families aware of all of the wonderful things they can do to gain awareness and raise funds for Rett syndrome during ORSAM. This call was geared towards showing families around the country how to make this coming October the best yet. Visit the ORSAM page to hear motivating stories, tips on getting started and to learn 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

Attention All Grandparents!

Have you joined the IRSF Grandparents Network? This Network consists of close to 200 sets of grandparents of girls and women diagnosed with Rett syndrome. It is a wonderful opportunity to get to know other grandparents, share stories, ask questions, learn more about Rett syndrome and feel part of a special and unique group of incredible people! The Network runs mainly through email with an occasional informational conference call that grandparents are welcome to dial into and listen in. Please register today!

Even if you are not yet officially registered as a member of the Grandparents Network, please consider taking part in a very EASY and FUN fundraiser! IRSF is requesting that all grandparents consider participating in the Phantom Tea during the fall in honor of their granddaughters and October Rett Syndrome Awareness Month. The Phantom Tea is a “virtual tea party” which you invite your family and friends to participate in. You will be sent everything you need to get started—invitations, donation forms, thank you notes and of course tea bags! The only things you need to do are come up with an invitation list and supply the stamps. The recipients will receive your invitation, which clearly explains the purpose, and will proudly be able to donate to IRSF, learn a little about Rett syndrome and sip a cup of tea in honor of your granddaughter! Please contact Jennifer Endres today to get started or if you have questions about the Grandparents Network! jendres@rettsyndrome.org

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!

Interested in becoming a Regional Rep? The following states are currently vacant and waiting for the right person to step in—Indiana, Kentucky, Maryland, Minnesota, North Carolina, North Dakota, Tennessee and Wyoming. Learn more about the program and consider applying today!

Please contact Jennifer Endres if you have questions about the Regional Representative Program! jendres@rettsyndrome.org

IRSF Networks are Expanding - introducing the Teachers and Therapists 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!

• 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

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.

Event Calendar

“Man never made any material as resilient as the human spirit.”

~ Bern Williams

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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