Thursday, August 19, 2010

Pepsi Refresh: Please Vote for IRSF!



Can a soft drink really make the world a better place? Through the amazing works of the Pepsi Refresh program, it can. Each month, Pepsi is giving away $1,300,000 in grants to fund organizations and community projects to help refresh the world. Anyone can submit their project to be considered for a grant in 6 categories then the public, you and I, get to vote on who receives the grant.

I love the Pepsi Refresh program and I ask for your vote for an organization that is dear to our hearts. For the month of August, one of the contestants for the $250,000 Pepsi Refresh grant is the International Rett Syndrome Foundation (IRSF). To vote for IRSF, please visit their voting page HERE.

Our niece, Alyssa, has been diagnosed with Rett Sydrome. Since she was very little, she has struggled with developmental problems, digestive and metabolic issues, and has stopped breathing on multiple occasions. Over the years she has been hospitalized for weeks at a time as doctors ran countless tests and studies trying to determine a diagnosis so that they could have some direction for her treatment.





Finally the diagnosis of Rett Syndrome was made. While it is comforting to have a diagnosis, the prognosis of Rett Syndrome can be unsure and unsettling.

Alyssa is four years old now. She is unable to walk or talk. She has difficulty using her hands to grasp a toy or touch a smiling face but she has developed distinctive hand wringing motions. She is fed through a feeding tube, attends physical therapy, speech therapy, and occupational therapy, and requires 24 hour monitoring of her oxygen levels and respiratory function. She occasionally has seizures and still stops breathing for moments if her respiratory system is under stress from something as simple as a regular cold. She is a little blessing in our lives and we keep her and her parents in our prayers.





Click HERE to read an article that was publised in the The Advocate newspaper on November 9, 2010 that highlights Alyssa.

Rett Syndrome is a neurodevelopmental disorder caused by mutations on the X chromosome on a gene called MECP2. It occurs almost exclusively in girls although there are rare cases of boys with the disorder. Rett syndrome is a rare disorder that is estimated to affect one in every 10,000 to 15,000 live female births and in all racial and ethnic groups worldwide. However, the symptoms may be misleading and result in many cases being misdiagnosed as cerebral palsy, autism, or pervasive developmental disorders. There is currently no cure for Rett Syndrome.

The International Rett Syndrome Foundation (IRSF) is the leading organization that provides ongoing research to find a cure to Retts Sydrome as well as support and advocacy for families affected by the disorder. Please vote for the IRSF to receive a Pepsi Refresh grant this month. Voting is open through August 31, 2010. Please visit http://www.refresheverything.com/rettresearchtoreality on the Pepsi Refresh website to cast your vote for IRSF. Thank you!

Every Pepsi product you purchase helps to refresh the world through generous grants and specifically helps great organizations like the International Rett Syndrome Foundation. For more information about Pepsi Refresh, please visit http://www.refresheverything.com

For more information on Rett Syndrome, please visit:

International Rett Syndrome Foundation: http://www.rettsyndrome.org/

National Institute of Neurological Disorders and Stroke: http://www.ninds.nih.gov/disorders/rett/detail_rett.htm

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