Archive for April, 2010

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:

Baja Fresh supports Progeria research
April 26, 2010

Eight months ago, Baja Fresh kicked off a year long awareness and fundraising campaign in 85 restaurants nationwide.  Coin collection boxes will be by the registers at the ‘mexican grill’-type chain for four more months.

Baja Fresh owner David Kim told the Progeria Research foundation he wanted to help: “The Progeria Research Foundation is a cause we’re proud to support.”

Baja Fresh also regularly holds fundraising nights for various organizations where they donate 15 percent of their net proceeds from the event back to the organzation. 

Click here to find a Baja Fresh near you that supports PRF.

Rare Disease Poll
April 12, 2010

            Imagine finding out you or a loved one has a life-threatening disease or condition.  Then, finding out that the disease is so rare, there is little to no information, research, studies, or treatment.  That is, of course, assuming the disease was even common enough to be diagnosed.  This is a reality for one in ten Americans.  And while apart, these rare diseases may affect smaller groups of people, together there are 30 million people affected by rare diseases. 

            In a survey asking how important people thought it is to research rare diseases in comparison to more widespread diseases, the results were:

            Less important 16%

            Equally as important 70%

            More important 12%

            Not sure 2%

           

     75% of respondents were women, and 25% were male.

            Jim Gibbons, the governor of Nevada issued an executive proclamation on February 8, 2010 declaring February 28, 2010 as Rare Disease Awareness Day.  By receiving attention at all levels, rare diseases are coming to the forefront of the minds of Americans.  In his proclamation, the Governor wrote:

“Whereas  diseases such as ‘Lou Gehrig’s disease’ are well known, while others, such as ‘Erdherim-Chester Disease’ remain unfamiliar to the public, so that, affected citizens have a large burden while raising research funds; and whereas nearly one in ten Americans have rare diseases, therefore, thousands of Nevada residents are affected; and  whereas the National Organization for Rare Disorders, patients, medical professionals, researchers, government officials, companies in support of treatment development and citizens are bringing such rare diseases into focus for the public in order to bring awareness to the State of Nevada concerning this public health issue.” 

            The National Institute of Health estimates there are approximately 6,800 rare diseases.  Of those, 75% affect children.  Since so many rare diseases have ties to more common diseases and conditions, research for even those that are the most rare of these diseases is crucial, and can be the key to ensuring fulfilling lives for millions from the discovery of treatment or a cure for one rare disease.  That over 80% of people surveyed believe that rare disease research deserves equal or more importance proves that awareness for rare diseases is prevalent and affects many people in some way.

More on awareness:

            The movie, Extraordinary Measures, focuses on a family whose two children have life-threatening diseases.  The movie was released in January, 2010 and was based on the true story of Aileen and John Crowley whose children had Pompe’s disease.  The film shows the parents’ willingness to do anything to save their children, including financing and ensuring research for treatments.  The trailer for the movie is below:

Children Diagnosed with Progeria in the World
April 5, 2010

There are currently 64 known children living with Progeria in the entire world.  Below is a map that allows you to move from country to country and by clicking on the blue placemarkers, you can view how many children are diagnosed with Progeria in that country.

The ‘Find the Other 150’ Campaign is an effort by the Progeria Research Foundation to find the, statistically, other 150 children living with Progeria in the world.

Timeline
April 4, 2010

This link will lead you to a flipbook displaying some of the remarkable accomplishments of the Progeria Research Foundation in the past ten years.