When Adam and I started Griffin’s Guardians we knew helping families locally was on the top of our list to do. We saw daily the hardships, loneliness, stress that families that surrounded us at the clinic had to endure and those that didn’t have the support that our family had. So we established a wonderful relationship with Upstate Golisano’s Childrens Hospital who refers families of a child with cancer to Griffin's Guardians. We make contact with the family and learn about their struggles and how we can help them. Since November we have helped several families up to $500.00 each by paying their kerosene bill, car insurance, gas cards (because we have families who travel daily to the hospital- 50 miles one way), medical copays, groceries and rent!
If a family is in good financial standing we plan a memory for the child. In January we hosted a frozen themed party at Billy Beez in Destiny for a 3 yr old little girl with her family and friends! Adam and I know how important it is to make as many memories as you can. A cancer diagnosis reiterates how truly short life can be so for Griffin's Guardians to offer this option is amazing.
Another piece that Adam and I really wanted Griffin’s Guardians to part of was Childhood Cancer Research! Did you now in the last 20 years, only three new drugs have been approved that were specifically developed to treat children with cancer?
The chemotherapy that Griffin took, was not meant for a child, it was meant for an adult. We had to do a lot of tweeking of his dosage to see what he could handle. This isn’t right. It isn’t right to expect these children to fight the biggest battles of their lives when the treatment in many cases wasn’t even designed to treat them!
So when the St. Baldrick’s Foundation came to us in April of 2015 and asked for us to partner with them, we were ecstatic. St Baldrick’s is the worlds largest private funder of childhood cancer research. In May of 2015 we presented St Baldrick’s a check for $25,000 to fund a research grant in Griffin’s honor. Adam and I read through 30 different grants and chose one that related to brain tumors. When it pertains to brain cancer the most challenging piece of this is finding something to cross the “blood brain barrier”.
Our research is being conducted at the University of Michigan (and if you know my husband- he is a DIE HARD Michigan State University fan and alumni) so this research had to be exactly what he believed in to pick one conducted at his biggest college rival. LOL
On December 28, 2015 my brother in law and sister in-law, (Matt and Callie) went to visit the research facility and met the researcher, Dr Chertok! One of the greatest attributes that St Baldrick’s Foundation offers us is their transparency. Matt and Callie toured the area where the research is being conducted. Dr Chertok was blunt about her frustrations with the lack of funding and research for pediatric cancer and expressed how grateful that out of all the grants we reviewed, we believed in hers!
Dr Chertok's goal is to make surgery for tumor removal a thing of the past and make non-invasive tumor removal or destruction a very real, effective option for families. Her research focuses on delivering "chemicals" or drugs via microbubbles directly to the tumor site. This in return will ignite an immune response to destroy the tumor. In addition, it subsequently will destroy the tumor if it returns since the body now would recognize the tumor as "foreign" or bad; similar to the way a vaccine works.
She indicated the drugs that they are currently using are not necessarily new, but they are all drugs that have failed in clinical trials. They failed because while they liquefied the tumor they also caused immune responses throughout the whole body and vital organs were attacked. Her research is working on the delivery of the drugs directly and exclusively to the tumor using a combination of micro-bubbles that are injected through an IV. They then would use an ultrasound that guides those micro-bubbles to the correct spot and then "pops" the micro-bubbles, causing the drugs to be released directly into the tumor. So far they have seen very promising results in mice.
The biggest component for Adam and I... is for our supporters to know where their donations are going, when we indicate we donate to research. It isn’t just “going to research” but it’s going somewhere we are actively part of the process. The other cool piece is that anyone who shaves their head under “Team Griffin” for St Baldrick’s, ALL of those dollars raised directly funds the research we have chosen. It’s amazing to us to be able to share this with the shavees, especially the children who shave so they understand exactly the impact of all the money they raised.
The Big Shave Date is at Kitty Hoynes, Syracuse on 4/10/2016 and Griffin’s Guardians will be making another big announcement at this event! We are super excited and yet super humbled by the love and support we continue to receive. With your support, we are touching the lives of the families in our community and yet we are part of something bigger… Childhood cancer research which could change the lives for all our children across our nation.
Adam and Erin
“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” ~Mother Teresa