Archive for February, 2010

Pancake Breakfast in Kentucky
February 26, 2010

     The family of Zach Pickard is hosting a Pancake Breakfast  and Silent Auction on March 6, 2010. The event will take place at the Frankfort, Kentucky Applebee’s from 8 to 10 in the morning. Ticket can be purchased at the door for five dollars.
     The Kentucky chapter of the Progeria Research Foundation rose over $100,000 in the past two years.
     Zach has appeared on numerous news shows in Kentucky as well as TLC’s documentary “6 Going On 60.” He is currently enrolled in PRF’s triple drug trial at Children’s Hospital Boston.

**UPDATE**

The following is a photo of Zach with his aunt and uncle at their successful Applebee’s fundraiser:

Photo Courtesy State-Journal.com

Triple Drug Trial
February 26, 2010

The Progeria Research Foundation launched their triple drug trial in August, 2009. The goal is for three drugs to complement one another in stopping the production of the abnormal protein progerin which causes Progeria. The three drugs are Pravastatin, Zoledronic acid, and Lonafarnib. The trial will last two and a half years. In the clip below, Audrey Gordon, President and Executive Director of PRF, discusses how this second trial is different from the first:

PRF President and Executive Director Audrey Gordon
February 16, 2010

     Audrey Gordon is the President and Executive Director of the Progeria Research Foundation.   Audrey was named one of the 2004 North of Boston Business and Professional Women of the Year.  She is the front runner of countless efforts to fulfill PRF’s mission of finding a treatment and cure for Progeria. I asked Audrey where she got the inspiration to start the foundation:

Progeria Research Foundation Inspiration – Watch more Videos at Vodpod.

Meet Lindsay
February 8, 2010

     Lindsay Ratcliffe is a young girl living with Progeria.  This video truly allows you to see how fully Lindsay  is living her life and letting little stand in her way.  At five years old, Lindsay attends school and plays just like other children her age.  Her parents remain hopeful as the community rallies in support.

     Lindsay’s family was interviewed by FOX-2 and appears in this news video from May, 2009.  FOX 2’s Deena Centofanti has more:

Vodpod videos no longer available.
 
 
 
 
 
 
 
 

more about “Lindsay Ratcliffe“, posted with vodpod

 

     Experts do not believe Progeria is hereditary.  In children with Progeria, the cell nucleus is a dramatically different shape (bottom right) than the cell nucleus in healthy individuals (top right) as demonstrated below:

Image from MedicalNewsToday.com

This image gives you a better sense of the science behind Progeria and what causes this genetic condition in 45 children across the globe.

Find the Other 150
February 1, 2010

            The Progeria Research Foundation began the ‘Find the Other 150’ Campaign three months ago.  The idea of the campaign is that there are statistically one hundred and fifty other children in the world with Progeria who are either undiagnosed or unknown by the organization.  In just these three months there have been three children identified; two are from Brazil and one is from Turkey.  PRF has set up a separate website to get the word out about this campaign.  Press releases about Progeria are being released in six languages across the world. 

          Once families are in contact with PRF, they can more fully understand Progeria and have access to the medical facilities they need as well as a network of families who know what one another is going through.  A clinical drug trial began in May, 2007 at Boston Children’s Hospital.  In just ten years, the Progeria Research Foundation has discovered the cause of Progeria and is working on treatment. This video introduces you to the children involved in the trial:

Dr. Leslie Gordon is the Medical Director of the Progeria Research Foundation.  She says the campaign is necessary to find children with Progeria:

As a parent of a child with Progeria, I don’t want other parents to feel helpless in diagnosing and treating their child. The “Find the Other 150” Campaign will allow PRF to provide these children with life-changing treatments and connect them with local medical professionals and other families of children with Progeria.

            The symptoms of Progeria include osteoporosis, growth failure, loss of body fat and hair, joint stiffness, cardiovascular disease and stroke (ProgeriaResearch.Org).  If you know a child with symptoms of Progeria, you can contact Audrey Gordon, President of the Progeria Research Foundation, at agordon@progeriaresearch.org.

Image from FindtheOther150.org