UK Reunion 2010
April 29, 2010

     Hayley Okines is a 12 year old girl from the UK living with Progeria.  She is raising money to fund a 2010 UK Reunion for children around the world with Progeria. The event will be held August 6-12. Hayley and her family are trying to raise £30,000 to make this dream come true.  They have participated in events across the country but want to hold the reunion in the UK for the first time.  So far, twenty four families have been invited and 10 are confirmed to attend.

Courtesy UK Progeria Reunion 2010 Facebook Page

     Hayley’s family said the funds will go towards travel, entertainment, and other expenses.  They are reaching out to many different sources for funding.  The Progeria Family Circle has donated £13,500.  Hayley’s mom, Kerry, said her daughter has been fortunate in her ability to take past trips, but she is hopeful she can fulfill this dream of Hayley’s as well.  Comments from supporters on the “UK Progeria Reunion 2010’s” Facebook page include, “It’s great to see you looking so well, I hope the treatment you receive in Boston continues to help you and I wish you all the best of luck in your fund raising for the reunion. You and your parents are truly an inspiration to us all!”

     Hayley is currently participating in the clinical drug trials with PRF in Boston, Mass.  Hayley recently visited Boston in April to attend the three day workshop attended by scientists from across the world.  

     Hayley’s story is one of hope as this preview of an upcoming documentary about Hayley shows:

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

Inspiration
January 25, 2010

       I was introduced to the Progeria Research Foundation when I was in middle school.  The foundation had an office next to my dad’s where I would sometimes go after school. 

       One of my first memorable volunteering experiences was for the Progeria Research Foundation.  I spent a day of my break with two friends stuffing hundreds of envelopes.  I felt very accomplished after this experience and continued to volunteer at different events sponsored by the foundation.  My two friends and I even appeared in PRF’s newsletter in a picture taken from that day of volunteering.  PRF holds a bi-annual benefit for research that I have also volunteered for.

       Since the foundation is located in my hometown, it has been difficult to volunteer since I’m living at school in Connecticut.  However, I still try to educate others about Progeria when I get the chance. 

       TLC recently aired “6 Going on 60” which documented the lives of two girls, Kaylee and Lindsay, living with Progeria.  The moving documentary displayed the struggles and triumphs of their parents and families as their daughters try to live normal lives.  I watched with several of my roommates. They were moved and curious to find out what I knew about Progeria.  This made me realize that I can do my part to educate others and spread awareness for Progeria.