Friday, July 22, 2011

Team Big J Willy!!


As Gavin would say, "It's tricky."

It's hard to ask for donations. It's hard to give support. And when you do decide you want to donate, it's hard to figure out which cause to give to and how much to contribute.

Over the years, I have done a little fundraising. When Jacob's doctors thought he had Tuberous Sclerosis Complex, I sent out handwritten letters asking for donations during their May Awareness month. Later, after Neurofibromatosis Type 1 was added to Jacob's diagnosis, I did the same once a year for NF1. I worked at a law firm for a few years and we did fundraisers every year for the United Way of the Big Bend, and last year our family participated in the Shamrock Scurry at our church to raise funds for missions. TD and Gina have donated a portion of each of their paychecks for years to the Children's Tumor Foundation (CTF). I’ve always enjoyed the small part I (we) played in the fundraising and I know fundraising is important and makes a huge difference for the cause. I felt terrible that I hadn't participated in one in a while.

Feeling this way, I started to look for something to support in hopes to again make a small difference. After all, if we all put in a little, it turns out to be a lot!

Most of you received my email a few weeks ago from the Brian Tumor Foundation for Kids (Brain Tumor Kids) asking for donations. They are holding their annual fundraising run this weekend in Atlanta, GA. I had really hoped to participate in that run, but, for many reason, we weren't able to. BTFC has touched our lives directly through their Butterfly Fund. This fund is a financial assistance program that provides direct financial assistance to needy families of children and young adults with brain and spinal cord tumors for items not covered by other means. Some of the expenses the Butterfly Fund helps with are assistance with rent or mortgage payments, utility bills, car loan payments, car repairs, miscellaneous household expenses, etc., which a family may be unable to afford due to loss of work at the time of a child’s diagnosis and treatment. It also covers items not normally covered by some health insurance plans, such as special medications, long-term or special rehab services, hearing devices, wigs and prosthetic devices, home health services, and tutoring. They will cover travel and lodging expenses associated with seeking and/or obtaining treatment at locations outside of the patient’s city or state and funeral expenses. The Butterfly Fund made an enormous difference in our life by helping with some of our high gas costs back and forth to Gainesville for Jacob's multiple treatments. They have even sent packages for me and the kids. Not too long ago I received a nice huge canvas tote bag sporting their logo and the kids got a package in the mail with Target Gift Cards for Jacob and Brie and a bath paint set for Gavin. That little box made three kids very happy! All of that was made possible due to donations and fundraising. If any of you were able to donate, thank you!! BTFC is a more than worthy cause and is making a positive difference in so many children’s (and their family's) lives who are living with horrible brain tumors. Our family is an excellent example!

Their web addresses are and

Because we weren't able to participate in BTFC run, I started looking for another one, something later in the year, giving us more time to prepare and recruit donations. Jacob's stepmom told me about a run in Clearwater, FL, called Moving Towards a Cure, put on by Miles of Hope. I read about their annual fundraisers and started thinking about participating. It was close to our wonderful family in St. Pete, would be easily accessible for all of us and would be a lot of fun. I started walking and running every other day. Feeling like I would be able to run 3.1 miles by the end of September (maybe, lol), I registered and completed a home page to start recruiting support for Jacob's team, Team Big J Willy!.

Miles for Hope’s Moving Towards a Cure is currently part of the funding for a "research grant to University of California Los Angeles (UCLA), neurosurgeon Linda Liau, M.D, PhD to begin the clinical trial, Optimizing Dendritic Cell Vaccination for Low Grade Glioma Patients. This clinical trial is the first trial of its kind for patients that have been diagnosed with low grade gliomas, a common form of brain cancer. This grant is the collaboration to fund research that has the potential to improve the lives of brain cancer patients." Being curious about how a vaccination worked for brain cancer I have spent several evenings over the last week reading articles about "Dendritic Cell (DC) therapy." DC therapy "represents a new and promising immunotherapeutic approach for treatment of advanced cancer as well as for prevention of cancer." It is fascinating, but a bit hard to understand. Basically DC therapy uses a patients' own cancer proteins to teach the body to fight the disease. UCLA is using it for malignant gliomas. This type of brain cancer usually requires painful treatments that often don't stop the disease's progression and the patients only live for about a year after being diagnosed. Vaccines made from a person's white blood cells mixed with tumor proteins may make the body build an immune response to kill tumor cells. The funds raised at the Clearwater run will be put towards expanding the Dendritic Cell vaccine trail to low grade tumors and pediatric patients. Moving Towards a Cure's website states that they bring brain tumor awareness and support trials and research. This is the cause I will be running for in September. I will be sending out an email to everyone if you would like to join our team to run, walk or cycle with us, or if you would just like to make a donation.

My heart goes out to all persons living with horrible illnesses and diseases, especially children. My heart breaks for children and elderly who are hungry or homeless. Like I said, there are so many worthy causes available to us it is hard to know which is the best to support. Having said that, it was really very simple for me. Jacob is my motivation. Jacob is the person I want to help most and he is the reason my heart is drawn to fundraising for brain tumors. In my opinion, Moving Towards a Cure isn't going to help Jacob or Neurofibromatosis Type 2 any time in the near future (I did find a blog of a woman who lives in Mexico and received Dendritic Cell (DC) therapy at Oasis of Hope, which is an alternative cancer treatment center. Her blog suggested it didn't cure her NF2, but was a successful treatment for her. She doesn't have any recent post for me to know how she is doing now.), but, for me, it is a worthy cause, it just isn't "THE" cause. Wanting to help Jacob and the NF2 community, I have decided to also send out invitations to donate to the Children's Tumor Foundation (CTF). I will be holding a virtual tea in Jacob's honor. A Virtual Tea for NF is not actually an event, but a mailing for Jacob's family and friends. I will be sending out an invite to support the Children’s Tumor Foundation in honor of Jacob and to have a cup of tea compliments of the Foundation. I could write about all the things CTF is doing for NF, but please visit their website if you want details. All of CTF funds go to the support of patients and families and research for NF1 and NF2. I'm not sure how Jacob would feel about having a tea party for him, but it is the best I can do since CTF isn't having a NF Walk in Florida this year or any where near us.

Thank you for reading this long blog post about three really great causes, and if you haven't already found a cause to donate to this year, I hope that you will consider one of the ones I have mentioned. Please be on the lookout for my follow up emails!!

Thank you so much.


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