GFPD Fall 2013 E-Newsletter

GFPD NEWS IN BRIEF

  • The GFPD held its 2013 Family and Scientific Conference in Lincoln, NE this summer with 130 participantsincluding 21 individuals with PBD, their families and more than a dozen researchersin attendance. Visit http://www.thegfpd.org/2013-conference to view professional bios, presentation slides and video, and more.
  • The GFPD has awarded four grants to scientists conducting research in the field of peroxisomal disorders. The grant recipients are Dr. Nancy Braverman of McGill University, Dr. William Rizzo of the University of Nebraska Medical Center, Dr. Joseph Hacia of the University of Southern California, and Dr. Steven Steinberg of Kennedy Krieger Institute. Read more about the recipients and their research projects at http://www.thegfpd.org/gfpd-awards-four-grants.
  • Look for our brand new webstore, coming soon! In the coming weeks, visitors to our website will be able to purchase GFPD merchandise, including apparel, car window decals, coffee mugs and more. All proceeds support the GFPD's mission of helping families affected by Peroxisome Disorders in the Zellweger spectrum though support groups, in-person meetings and by funding research grants.

GFPD FAMILY SPOTLIGHT
 

GFPD Dinner Dance – October 5, 2013 – Turlock, CA
The Alfaro family of Turlock, CA, hosted the second annual Dinner Dance in memory of their two “angel” children, Diego & Adrian. Both brothers were diagnosed with Peroxisome Biogenesis Disorder—Zellweger Spectrum Disorder (PBD—ZSD) and before they passed, their parents Carolina and Jose promised to keep their memories alive. More than 250 guests attended the Dinner Dance to help the Alfaros keep that promise, raising funds for the GFPD in their sons’ honor.

Event attendees were treated to dinner, live music, raffles and a silent auction. The raffle and silent auction items alone raised over $5,000. One raffle winner even donated her winnings of $750 back to the GFPD in an act that truly honored the spirit of the evening and the immense hard work of the Alfaros and their many volunteers—including servers, bartenders, greeters, raffle organizers, and entertainers—who made the event possible.

Carolina and Jose welcomed GFPD families who traveled from as far away as Arizona and Washington. They also introduced Ainsley Wade, a two-year-old girl with PBD, as the event honoree. The Alfaros chose to include an honoree this year to represent the children who benefit from the contributions made by those who attended and donated to the event. The Global Foundation for Peroxisomal Disorders, which received all proceeds from the Dinner Dance, funds research through grants, assists families by providing support and coordinates an equipment exchange to help offset the exorbitant costs families are faced with when dealing with a diagnosis of PBD-ZSD.


The evening concluded with guests dancing the night away to the music of the Mike Torres Band, who returned for their second year at the Dinner Dance. The response to Diego and Adrian’s Dinner Dance was so positive the Alfaros expect an even bigger turn out in the future. The Alfaro family raised nearly $20,000 for the GFPD with this year’s event, besting their previous year’s total by $5,000. The 2013 Dinner Dance was made possible through generous donations from local and national sponsors, and by the tireless work of the Alfaro family, their friends, volunteers and other supporters.

 

To see more pictures from the Diego and Adrian's Dinner Dance, please visit http://www.thegfpd.org/diego-and-adrians-2nd-annual-dinner-dance-benefits-gfpd.
 

GFPD RESEARCH UPDATE
 
University of Southern California researcher Dr. Joseph Hacia was in attendance at the Dinner Dance fundraiser in Turlock, CA. Dr. Hacia is a recent recipient of a GFPD grant which was made possible by the efforts of GFPD families and supporters like the Alfaros. Dr. Hacia received $50,000 to investigate potential drugs for therapeutic use in PBD patients. His project, entitled “Neural Cell Resources for PBD-ZSD Drug Testing,” seeks to test all drugs already approved by the Food and Drug Administration for their possible effectiveness in treating symptoms associated with peroxisomal disorders in the Zellweger spectrum. As Dr. Hacia explained to the crowd gathered at the Alfaro family’s Dinner Dance fundraiser, testing all FDA approved drugs will provide him and his team of researchers with insights into which drugs may be worth testing further for their specific benefits.
 
Dr. Hacia was one of four researchers who was awarded a GFPD grant to explore and further the science in the field of peroxisomal disorders. Each of these researchers also delivered presentations to families in attendance at this year’s Family and Scientific Conference in Lincoln, NE. Video of those presentations, along with slides and information about the presenters can be found at http://www.thegfpd.org/2013-conference.



 

 

The GFPD family mourns the recent loss of the following children due to the devastating effects of PBD-ZSD:

Jordan Danielson, August 1, 2007 – February 8, 2013 (Florida, USA)
Cash Tweedy, November 26, 2012 – February 12, 2013 (Washington, USA)
Aila Dixon, September 10, 2012 – March 6, 2013 (South Dakota, USA)
Kendall Romero, September 21, 2012 – March 9, 2013 (New Mexico, USA)
William Rogers, November 27, 2012 – March 13, 2013 (Minnesota, USA)
Cali Everngam, November 29, 2012 – March 14, 2013 (Maryland, USA)
Abdullah Harak, March 20, 2003 – April, 2013 (Giza, Egypt)
Autumn Maxwell, February 22, 2012 — April 3, 2013 (Tennessee, USA)
Talon Whitcomb, August 10, 2011 — May 14, 2013 (Massachusetts, USA)
Ayana Arafat, February 24, 2013 — May 31, 2013 (Virginia, USA)
Anthony Billaney, February 19, 2013 — May 31, 2013 (Switzerland)
Lexie Harrison, December 4, 2010 — June 18, 2013 (Retford, UK)
Tucker Mynhier, March 8, 2013 — September 2, 2013 (Tennessee, USA)
Annabelle Lee, June 21, 2012 — September 15, 2013 (Louisiana, USA)
Board of Directors
 
President
Shannon Butalla
shannon@thegfpd.org
 
Vice President
Anne Park Hopkins
annepark@thegfpd.org
 
Treasurer
Melissa Bryce Gamble
melissa@thegfpd.org
 
Secretary
Geoff Edgar
geoff@thegfpd.org
 
Medical/Scientific Liaison
Mousumi Bose
mousumi@thegfpd.org
 
Registry & Support Group Coordinator
Pamela Marshall
registry@thegfpd.org
 
Communications Coordinator
Heidi Harris
heidi@thegfpd.org
 
Woody Woodbury
woody@thegfpd.org
The GFPD appreciates the input and guidance of our Medical and Scientific Advisory Board. For a complete list of members, please visit http://www.thegfpd.org/for-doctors/medical-scientific-advisory-board.

Upcoming Events

Ilan-a-thon
Baltimore, MD
May 18, 2014
ilanathon.org
Contact: Mousumi Bose: mousumi@thegfpd.org



Plan a Fundraising Event in Your Community

Please contact Shannon Butalla at shannon@thegfpd.org for more info.
Stay Connected

We have a great online community. If you haven't plugged in yet, check us out:


GFPD Parent Support (Parents & Guardians only)
PBD Dads: A Band of Brothers (Dads only)
GFPD Shutterfly Site (Parents & Guardians only)
GFPD Extended Family Support
GFPD “Public” Facebook Page
GFPD website
 
If your contact information has changed, please email Pamela Marshall at registry@thegfpd.org so we can update our records.

SUPPORT GFPD


GFPD is a 501 (c)(3) tax exempt public charity incorporated in the state of Oklahoma. By investing in GFPD, you are supporting children and families facing Peroxisomal Biogenesis Disorder-Zellweger Spectrum Disorder (PBD-ZSD) and assisting family members and professionals through educational programs, research, and support services.
 
All contributions to GFPD are tax-deductible (USA) in the year paid. Donations are accepted by mail or online at www.thegfpd.org.
 
Please mail checks to:
Global Foundation for Peroxisomal Disorders
5147 South Harvard Avenue, Suite 181
Tulsa, OK 74135





Designate contributions to GFPD through your employer's United Way Campaign or through the Combined Federal Campaign for Federal employees.  Contact Melissa Gamble melissa@thegfpd.org for more information.

Raise money for the GFPD when you search and shop online!

   
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