Dear Rett syndrome community,

We are very excited about this year’s October Rett Syndrome Awareness Month! I know you are all working hard planning spectacular fundraising events, asking for donations, and increasing public awareness by securing a governor’s proclamation in your state and going to your local TV station or Cable Company with our public service campaign. I am sure many are also attending a local Blue Sky Event near you. Whatever activity you pursue during this very important month, getting involved with your community will stimulate more activities for months to come.

Clint Black, our national spokesperson featured in our public service campaign, is holding a “Black Out Rett Syndrome” concert in Baton Rouge, Louisiana on October 27th to raise money for Rett syndrome. So for all the families and volunteers in neighboring states, please attend if you can make it. Clint will be there to make it a tremendous Rett syndrome event and personally thank every one of you for showing! See the Black Out Rett Syndrome website for details. Use this concert as a reason to approach your local TV station and Cable Company. Our PSA with Clint Black is still new and has resulted in millions of dollars worth of free airtime for Rett syndrome.

I am extremely thrilled to tell you of a matching gift opportunity that will help you raise more money and public awareness too. Two generous donors have created a $300,000 matching gift program for the month of October, we now call “Black Out Rett Syndrome Month.” Judi Rees, a grandmother from California, donated $250,000, and the Rachel Ames Rohr Foundation has pledged $50,000 to create this incredible fundraising initiative for Rett syndrome. Everyone who goes to the IRSF or Black Out Rett Syndrome website to donate during “Black Out Rett Syndrome Month,” may be eligible to have their gifts DOUBLED!

The following donations are eligible to be matched:

a first time personal non-event donation

an increase in your personal gift exceeding the average of the last two years

any new gift raised by new events, including Rett Racers

Strollathon donations that exceed the two year October average of $230,000

all family event donations that exceed the average gift of the last two years.

All together, these gifts will be credited with matching gifts up to a total of $300,000!

I hope I have fueled you with the motivation to get your gifts matched, and I wish you great success this month. Let us Black Out Rett Syndrome together and make it the best ORSAM ever!

Stephen Bajardi
Executive Director
IRSF

BLACK OUT RETT SYNDROME in support of October Awareness Month

October has always been our time to make a difference; however this October has a special call to action! Help us Black Out Rett Syndrome! 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. Ask the world to embrace our children and help us Black Out Rett Syndrome!

IRSF is here to help you make each activity a success. Contact IRSF for assistance in turning your ideas into reality, or leverage one of our ideas listed below. This month is dedicated to raising awareness and it can only happen with your involvement!

NEW: Angel Awareness Cards

As our introductory promotion, FOR A LIMITED TIME ONLY, IRSF is printing 100 FREE personalized awareness cards for the FIRST 100 requests in preparation of Black Out rett Syndrome Month! Email your child’s name, age, picture and brief write-up (110 wrds) to lgeglein@rettsyndrome.org to receive a proof of your cards. Please allow a few weeks for shipping and handling once approved. Orders have already been flying in. Order today – you don’t want to miss out!

P.S. Please allow up to 2 days for a proof and 2 weeks for printing/shipping

October is a busy month for Strollathons with 5 events this coming weekend! There is still time to get involved with the October events and, as Steve Bajardi mentioned in his message, you may have the opportunity to double your money when donating to ANY Strollathon during the month of October. Once our Strollathon donations received in the month of October (only) reach $230,000, the match kicks in and every dollar over $230,000 received in October will be matched. This includes donations to past Strollathons made during the month of October, too. Even though our Spring Strollathons are no longer accepting online donations, you can still mail in offline donations to help us achieve the match!

Sending thanks, congratulations and good weather to our great volunteers leading this weekend's Strollathons: Charity Proffitt, Florida – Lakeland; Ashley Alexander, Georgia; Joey Razzano, Portland; Leslie Greenfield, New Jersey; and Erica Robertson, NorCal.

Rett Racers

Cammy, daughter of Rett Racer Jackie Babiarz, poses with the great donated items from Nike!

Have you seen the updates on Facebook from our Rett Racers on their training and fundraising efforts? Jackie Babiarz and Laura Brown are our first racers – participating in the Chicago Marathon on October 7th. They will be wearing great gear donated by Nike with assistance from board member Bill Farnum. Thank you Nike and thank you Rett Racers! If you are in the spectator area on that day, watch out for our brand new IRSF purple flag that supporters will be carrying! In addition, IRSF’s very own Lisa Geglein is fundraising as she trains for a Tough Mudder event in Kentucky the 3rd weekend of October.

Donations to all Rett Racers made in the month of October will be matched!

Want more information? Visit the 2012 or 2013 Rett Racers webpages or contact Marcy Fritter. The Rett Racer program is for any distance or endurance participant who has already registered or confirmed a spot in an event.

Webinar

Register now for an IRSF-hosted educational webinar: “From Mind to Molecules: Neurobiology of RTT”, Presented by Jennifer Larimore, PhD, Funded Investigator, Agnes Scott College, on Oct 23, 2012 from 1:00 PM EDT - 2:30 PM EDT

Register at:
attendee.gotowebinar.com/register/6983389019920206336

Webinar Description: The brain is the most complex organ in the human body. When the molecules that regulate how a brain forms do not function properly, diseases such as Rett Syndrome result. This session will address some of the basic concepts to better understand the dysfunction occurring in patients with Rett Syndrome in the whole brain as well as individual brain cells. While we will walk through some Neurobiology 101 in this webinar, we will also cover the highlights in the current literature that may bring us closer to understanding and treating Rett Syndrome.

After registering, you will receive a confirmation email containing information about joining the webinar.

Facebook Generation Can Now Experience "Silent Angels: The Rett Syndrome Story"

"Silent Angels: The Rett Syndrome Story" featuring Julia Roberts will stream on Facebook at no charge during October Awareness Month! IRSF and our friend’s at Milyoni bring Social Cinema and Social Consciousness together to raise awareness and funds for Rett syndrome. Simply download the IRSF Social Cinema App on Facebook, watch yourself, and Share with all of your Facebook friends in October. Ask them to watch, learn, take the emotional journey with us down the path of discovery, and ask them to make a nominal donation to support IRSF’s long track record of funding critical break-through research towards Treatments and a Cure for Rett syndrome.

apps.facebook.com/irsfsocialcinema/products/1060-silent-angels

DONATE NOW

and potentially have your gift matched

Learn More About

Black Out Rett Syndrome Month

Purchase Tickets for the

Black Out Rett Concert

Become a Rett Racer

2012 | 2013

Watch

Silent Angels

on Facebook

Natural History Study - Oakland XIII

Ohio Rett Syndrome Symposium

Georgia Strollathon

Central Florida Strollathon

7th Annual Portland Strollathon

Minnesota Strollathon

NJ Strollathon

3rd Annual NorCal Strollathon

Oakley Jae's Family Fun Day For Rett Syndrome

Reeling It In For Rett: 2nd Annual Fishing Tournament

3rd Annual So Cal Strollathon And Picnic

Reeling It In For Rett: 2nd Annual Fishing Tournament

4th Annual Texas Strollathon

Black & White Affair

Grand Rapids Strollathon

5th Annual Spending Time Ending Rett Concert

Grandparents Network Open Call

Course For A Cure

8th Annual Tee It Up For Rett Golf Tournament

Mind to Molecules Webinar

Natural History Study - Chicago XIV

Florida – Southern Strollathon

Black Out Rett Syndrome

Natural History Study - Chicago XIV

Participate in an Event Near YOU!

Be a part of raising awareness in your community by supporting and event near you. Visit IRSF's Event Calendar to get dates and details on upcoming events!

Create Your Own Fundraiser

Black Out Rett Syndrome Month is a great time to build awareness through fundraising! Think about activities that your family and friends already enjoy doing and tie fundraising to it. Often, there is no additional effort to fundraise in this way. Check out some suggestions here. Additional ideas and resources can be found in the "Fundraising and YOU" section of the IRSF website.

Contact IRSF's Special Events Manager, Marcy Fritter, at mfritter@rettsyndrome.org to help you get started on the fundraiser of your choice!

Clint Black Rett Syndrome PSA

Ask TV and Radio Stations to play the IRSF Clint Black PSA! Visit the custom website to see which stations have received and/or played the PSAs, and find easy to follow telephone scripts or form letters to ask your station to renew the momentum of airplay in your community. Families have been found, and many diagnoses have been made because of this PSA. This is a no-cost way for you to raise a LOT of awareness.

Governor State Proclamations

Governors in several U.S. states honor our children by signing proclamations declaring October to be Rett Syndrome Awareness Month. These proclamations then become available to you and can be downloaded for your use 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. We are supporting and tracking the efforts to procure proclamations in each state. Click here to see if your state obtained a proclamation in 2011.

Live outside of the United States? Check if your province or territory will sign a declaration in honor of your child!

Merchandise Sale

Use coupon code ‘blackoutrett’ to receive a 15% discount when you purchase awareness items through the IRSF online store starting September 15th through the month of October!

Visit the Black Out Rett Syndrome Month to learn more!

United Way Campaign!

September and October are usually the months when employees are asked to support their local United Way. Please encourage family and friends to direct their United Way pledges to the International Rett Syndrome Foundation. While we are not an approved charity in any of the 1500+ campaigns throughout the country, many organizations will accept “directed” donations to the charity of your choice. Simply write IRSF and our EIN – 31-1682518 on the donor’s choice line and if there is room include our address 4600 Devitt Drive, Cincinnati, OH 45246 – the more information included, the better! Over the years we have received donations through over 100 different United Way organizations throughout the country. In 2011 the foundation received over $75,000 from United Ways and individual company corporate campaigns.

Fall is also Combined Federal Campaign pledge season. The CFC consists of all Federal agencies, including the US military throughout the word and the Post Office. It also includes the quite a few state, city and municipal employees campaigns. In the 2012 campaign which took place in the fall of 2011, the foundation received over $52,000 in pledges - a 4% increase over the previous year’s pledges! Please encourage friends and family to participate and direct their donations – Our code for the Combined Federal Campaign is 11046.

The Combined Federal Campaign

CFC Code Number: 11046
If you have a fair happening near you, contact the office at 1-800-818-7388 for materials.

Donations

Please send to P.O. Box 706143 Cincinnati, OH 45270-6143.

Matching Gift Program

Check if your company has a matching gift program. Send forms to lhayden@rettsyndrome.org or by fax at 513-874-2520

Mail

Please send to 4600 Devitt Drive Cincinnati, OH 45246.

“My family has experienced first-hand, the devastation caused by this neurological disorder, and I am eager to support the exciting research on the horizon that can help reverse Rett syndrome."

~ Clint Black,
niece Cortney had lost her battle with Rett syndrome in 2003