Help Matthew raise money

Thank you so much for navigating this far and looking into supporting a cause that means so much to our family.  I am certainly not one that feels comfortable asking for donations, but please take a moment to read through our family's story and consider donating to a very worthy organization.

As many may know, my wife Leanne was diagnosed with Neurofibromatosis One (NF1) when she was a child.  Our daughter, Julia (11), and our son, Theo (9), have been diagnosed as well.  For those who may not know what NF1 is and the challenges that come with it, there is a great synopsis here: https://www.nfnortheast.org/what-is-nf/.

Leanne has had her challenges with NF1 including having some neurofibromas (small, non-cancerous tumors) removed and learning disabilities.

Theo has shown some symptoms, such as learning disabilities and delays, but overall he is very healthy.

Julia has had some larger complications.  At birth we noticed a red mark on her back and it turned out to be a neurofibroma that was growing just behind her lung.  It has caused severe scoliosis in her spine, which has required multiple surgeries to install back rods.  We consider ourselves lucky that Leanne already had a relationship with one of the top doctors in this field at Mass General, Dr. Plotkin.  He told us about a study being run at the National Institute of Health (NIH) in Bethesda, MD and suggested that we speak to the doctors running this clinical trial.  We are so glad that we did as Julia was put on a trail drug, Selumetinib; a MEK protein inhibitor, in February 2018.  Being a part of this trial was a whirlwind at first.  We traveled to NIH for a number of tests and appointments, but the staff there is so incredibly accommodating.  Julia now looks forward to her trips to "The Children's Inn", a hotel on the NIH campus that is geared specifically towards kids.  The drug was proven to initially shrink and now maintain the size of Julia's tumor, and is now FDA approved!

We are very lucky to be able to live comfortably with NF1 and are incredibly thankful to our doctors at MGH and NIH that help make that possible.  I am running the Falmouth Road Race this year to raise money for NF Northeast so that others in our situation can have the resources necessary for their journey.  It is my small part to give back to this amazing community that has helped us so much.

Thank you for reading our story, I hope it inspires folks to donate to a cause so close to our family.