Many of you have helped support my family and I in the opening of the first Leukodystrophy Center in the United States. We cannot thank you enough for your support, both financially and emotionally. I wanted to update you on our accomplishments over the past 2 years and let you know about our next Gala. For those of you that attended our first Gala in May 2015, you know how great an event it was! Please note that we are not participating in the Philadelphia Auto Show Black Tie Tailgate this year, as the money raised will be going to other groups/Departments within CHOP.
Great things have happened since that inaugural gala back in May of 2015, which would not have been possible without your support. The following is a brief list of the major accomplishments:
The Leukodystrophy Center of Excellence (LCE) at Children’s Hospital of Philadelphia (CHOP) opened May 2015.
Because of its success, the LCE goes from 4 patients a month to 6 to 8 patients a week with families travelling from all over the nation.
The Loie Hammond Memorial Lectureship Series was established to bring doctors and researchers from around the Country to collaborate on the latest advances in the treatment of Leukodystrophies.
Care Packages provided for newly diagnosed families and children facing extended hospitalizations (approximately 120 annually)
New research efforts started by major pharmaceutical companies in the field of leukodystrophy.
National exposure for gene therapy and leukodystrophy through CBS Sunday Morning with Jane Pauley which aired in October 2016.
“Loie's Disease” book published - a children’s book to explain leukodystrophy to families and
educators, nearly 300 copies have been provided to individuals and organizations across the globe (Europe, Australia, Canada, etc).
The creation of the Leukodystrophy Care Network (LCN), which will oversee and publish standards for other future Leukodystrophy Centers.
The opening (1st half 2017) of nine (9) more LCE across the United States in the following places: Stanford, Vanderbilt, Duke, Children’s Hospital of Chicago, Mass General in Boston, Kennedy Krieger Institute, etc.
This is an amazing number of accomplishments in the last 2 years, considering that when Loie was diagnosed in December 2012 (about 4 years ago), a very minimal number of resources were available to us. Most of those resources were through correspondence with families who have had a child with Leukodystrophy. You should all be proud of what your support has accomplished.
However, we are not done yet, and quite frankly, we have just begun. I am pleased to announce that we will be holding a second gala on Saturday May 6th, 2017 at Lincoln Financial Field, from 7:30pm to 11:00 pm. I have included the ticket and sponsorship information in this email. We will host a private VIP reception cocktail hour for invited guests, three course dinner and open bar. We will have a silent and live auction, with the highlight of the night being our "catch for a cure" where we auction off the chance catch an autographed football from an NFL player. As of now, it looks like Sal Paolantonio will be our MC again.
I know that all of you have been very supportive of our family over the last few years while my daughter heroically battled this disease and ultimately succumbed to the disease in January 2014, and I know that all of you have many other responsibilities (family, time, financial), but there is still so much to do, and we can’t stop. I am confident that because of what has been accomplished so far, in so little time, that within the next 3-5 years we will have treatments available to stop this disease in its tracks so that other children do not have endure what Loie and many other Children today have to endure. Even if you cannot attend the event on May 6th, any amount that you could spare would be hugely appreciated.
Once you have had an opportunity to review the above, and attached, and if you are willing to support this event, could you please get back to me to let me know what you can do so that I can get the needed information to you? I always hesitate asking, but we cannot do this alone. No amount is too small and please do not feel obligated to support the event.
My family and I thank you from the bottom of our heart for all of your support.