Archive for the ‘Misc.’ Category

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:

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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.

Doctor who helped identify all human DNA honored
March 29, 2010

     One of the doctors who unlocked the human genome, making it easier to identify and study the genes associated with Progeria and other genetic conditions is a recipient of the Albany Medical Center Prize in Medicine and Biomedical Research.

Photo Courtesy genome.gov

     Francis S. Collins, M.D., Ph.D. is the director of the National Institute of Health.  Collins will be recognized along with the others chosen for the prize on April 23 at the Albany Medical Center in Albany, N.Y.

     The Human Genome Project identified the approximately 20-25,000 genes and identified the sequence of 3 billion chemical pairs that make up human DNA.  The information was immediately available online to researchers and will be used to ensure a quick as possible route for researchers in medicine.

     Collins declined his portion of the $500,000 prize that would have been awarded in order to comply with ethical rules. 

     Other recipients of the prize are Eric Lander, Ph.D. and David Botstein, Ph.D.

Stay Connected
March 29, 2010

     Widgets are applications for the internet that allow you easy access to just about anything. There are widgets for weather, to take notes, or to tell the time. Shout Me is a widget that puts all your social media contacts in one place. You can put your URL’s to Facebook, Twitter, Linked In, MySpace, YouTube, and Flickr within the widget.
     Widgets allow you to multitask and be a click away from anything. Student Christen Scarpa said widgets are unique tool: “I think the accessibility of being able to see everything you’re working on at once is a really convenient tool.”
     “Because widgets exploit well-understood tools and technologies, they have lower entry barriers than complex native applications, and thus can be a good first step to assess the demand for an application on a specific platform before undertaking expensive native development,” research firm Gartner told Networkworld.com. Widgets are highly accessible and many websites offer simple tools to make your own.

Dr. Oz Show Monday March 8, 2010
March 16, 2010

Photo Courtesy DoctorOz.com
Photo Courtesy of ToledoFreePress.com

 

     Kaylee Halko and her parents, Tim and Marla appeared on the Dr. Oz show Monday. Staffers had contacted them after viewing the TLC documentary “6 Going On 60” that Kaylee appeared in.

     Progeria Research Foundation Medical Director Leslie Gordon and University of Michigan’s Dr. Jeffrey Innis joined the Halkos on the show.  Dr. Innis originally diagnosed Kaylee in 2004 and practices at University of Michigan C.S. Mott Children’s Hospital.

    Audrey Gordon told the Toledo Free Press that they were thrilled the medical show was interested in Progeria and raising awareness for the rare condition.

Progeria to be featured on The Dr. Oz Show
March 4, 2010

     Progeria will be the topic of The Dr. Oz Show on Monday, March 8.  The show airs at 5 pm est on the FOX channel in the Boston area.  Check your local listings for details. The Progeria Research Foundation’s Medical Director, Leslie Gordon will be appearing along with Kaylee Halko and her family.  Kaylee is a six year old girl with Progeria.

     Dr. Mehmet Oz previously appeared on the Oprah Winfrey Show and began The Dr. Oz Show in September, 2009.  Oz was Time Magazine’s 44th Most Influentional Scientist and Thinker in 2008.

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