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Friday, August 26, 2011 - 10:00am

It’s a difficult decision, but we’re taking a break from Team Hailey fundraising events for the foreseeable future.  More on that in a moment. 

First, we wanted to thank those who were involved in the ‘Davis Cup’ family golf outing in the Appleton area the other weekend.  The outing raised $4,000 for the PLGA Foundation!!  Thanks so much to those who contributed to and coordinated the event. What a great outcome!

While the battle still rages on and the need is still there, for a variety of reasons it is time to take a break from all Team Hailey sponsored PLGA events.  The Milwaukee ‘Hackin for Hailey’ outing in October will be the last one we do for the foreseeable future (Sign up for the ‘Hackin for Hailey’ Milwaukee golf outing is live on the events tab of our site.  Should be another fun year!!).  Unfortunately, this also means we will NOT be doing the Team Hailey 5k this April either. 

The PLGA Foundation will continue their efforts nationally, and our teamhailey.org website will remain up and running.  We will still read our guestbook regularly and post occasional updates on what’s happening with Hailey and our family in the journal.  And of course anyone who wants to make a tax deductible donation to the PLGA Foundation in the future will still be able to do so from our site at any time.  But at this point in time, after close to 5 years of events and several hundred thousand dollars raised for the PLGA Foundation, it’s just time for a break for all involved with Team Hailey...including many of you!

Please know that PLGA kids and families everywhere thank you, and our family thanks you, from the bottom of our hearts for your kindness, generosity, time, support, and encouragement over the last several years.  We will NEVER be able to express in words how much this has all meant to us.  Those are not just empty words...we truly cannot say it enough.

And the financial support and investment into the PLGA Foundation HAS had a real and tangible effect on the main goal for any of us PLGA families...finding better treatments and a cure!  A fight that continues. 

Please see the summary below of where the funds you have helped raise have gone over the last few years:   

Thanks again for the contributions from so many of you!

 

WHERE HAVE YOUR DOLLARS GONE:

Over the course of the past 4 years, families associated with the Pediatric Low Grade Astrocytoma (PLGA) Foundation and their contributors (including many of you!!) have raised over 6.5 million dollars, funding 5 international researcher/clinician conferences and over a dozen new cutting edge PLGA research projects.

The ultimate goal of these efforts is to identify new, non-toxic, non-invasive treatments, with no side effects or impairments, and a CURE for the children and families who battle these brain tumors.  

 

Projects funded by the PLGA Foundation:

Harvard’s Dana-Farber Cancer Institute

  • Founded a dedicated PLGA research Program in 2007
  • Program is driving force in search for causes & treatments
  • Multiple research projects and trials ongoing
  • Funded a full time Clinical Research Position dedicated to PLGA brain tumors

 

New York University, Langone Medical Center

  • Phase II Clinical Trial  of promising new drug Sorafenib

 

Johns Hopkins University

  • Study to determine the process of PLGA tumor growth
  • Discovered the “switch” to turn off tumor growth gene

 

St. Jude Children’s Research Hospital

  • Project focused on how PLGA’s grow (what feeds them) and what they’re made of

 

Washington University Children’s National Medical Center

  • Project focused on how PLGA’s grow (what feeds them) and what they’re made of

 

University of California, San Francisco

  • Research targeting stem cells in PLGA tumors

 

MD Anderson Cancer Center, Texas

  • Studying the makeup (molecular structure) of pediatric astrocytomas

 

University of London

  • Research focused on how PLGA’s grow (what feeds them) and what they’re made of

In addition, the PLGA Foundation has funded numerous national and international conferences and symposiums dedicated to PLGA research, and maybe most importantly, the critical task of raising researcher awareness and interest in the disease and fostering collaboration to cure it.

Friday, July 29, 2011 - 11:36am

We did not get the news we were hoping for yesterday.  It appears Hailey's tumor has grown a bit.  For now, we will likely stay the course and see what the next MRI brings, but we fear the tumor is on a slow growth path again.  At this point, there really is no obvious option out there to jump to even if the next MRI shows the same signs, so we continue to be in scary territory here just like so many of the families facing this kind of disease. 

Wednesday, July 27, 2011 - 3:32pm

MRI and chemo tomorrow.  Will post results as soon as we have them.

Monday, June 6, 2011 - 1:56pm

4 years ago today our world was rocked!!  June 6, 2007...even thinking about it now makes me sick to my stomach. 

Thanks for all the love and support over the last 4 years.  We couldn't have gotten this far without so many of you.