PLEASE NOTE: The following is a correction to the article Oprah Speak for Silent Angels Campaign, originally published yesterday in our most recent IRSFlash.

Oprah Speak for Silent Angels and the Children Helping in a Cause Campaign

On behalf of all those affected by Rett syndrome, IRSF would like to express their gratitude to Lora Barrick-Ramirez for her incredible efforts in spearheading the Oprah Speak for Silent Angels Campaign (OSSA) and the Children Helping in a Cause Campaign (CHIC). IRSF has pledged to assist with this initiative, in anyway they can, to ensure all is done to allow Oprah Winfrey to hear our plea.

Lora’s daughter, Brenna (age 14), was diagnosed with Rett syndrome less than one year ago. Brenna had been diagnosed with Cerebral Palsy for quite some time, but Lora’s motherly instincts told her it was not right; that she did not have CP. After pushing for additional testing, a positive MECP2 result was received in June of 2009. In this short time of being in the “Rett World,” Lora has become determined to spread awareness so that all families affected by Rett syndrome no longer have to explain what it is and that it is as familiar to the world as Cancer or Autism. The hope is that with awareness and knowledge will come support and with support will come a cure.

A few successes to date:

• In just a few short weeks, the OSSA Facebook page has close to 1,200 members
• Over 10,000 letters have been collected to date with many more pouring in each day
• The following website has been launched to offer the information to everyone who wishes to become involved: www.rettsyndromeawareness.com.
• A Rett awareness video is being created; close to 300 pictures have been submitted
• Ayme Sanchez, singer-songwriter, has agreed to share her Rett syndrome song, along with various other artists. A DVD featuring these beautifully written songs for those affected by Rett syndrome is being created and will be available in the New Year
• Jean Marc and France Genereux, choreographers for the So You Think You Can Dance television show, have offered their support to OSSA; they will tell their story in the video
• Mrs. Texas International, Bonnie Hubert, has agreed to support this campaign
• Lora will attend the Houston, TX Strollathon on October 31st as well as the Clint and Kevin Black IRSF benefit concert on November 1st; letters will be collected at these events
• A second IRSF Road Scholar truck is being unveiled in Texas and will deliver the letters to Oprah, in Chicago, in the New Year!

Looking ahead:

• School awareness campaign, Children Helping in a Cause (CHIC), is underway to assist with the ask to Oprah. Students all over the United States are being asked to write a letter to Oprah to ask for her help; they are also being asked to turn in a quarter with each letter to take part in the Quarters for a Cause Campaign.
• The IRSF staff and Board of Directors, as well as Kevin Black and his manager, have pledged to work hand in hand with Lora

To join this effort, please contact Lora Barrick-Ramirez at lora_barrick@yahoo.com or Jennifer Endres at jendres@rettsyndrome.org.

Stay tuned for more details…there is a whole team working on this campaign…the ideas and contacts are amazing!

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