Uncategorized

Letters from camp: day 5

Today is the last day of camp. We leave in the morning right after breakfast. It has been an amazing week and I will definitely be sad to go, but so thankful for all I have learned while I was here.
This morning we had the opportunity to meet with a research doctor, Dr. Stiles, from Dana Farber who is working on developing new targeted therapies for pediatric low grade tumors. He presented a lecture on what they are working on and what may be available in the near future. He also took the time to talk to us and answer as many questions as he could.
These therapies are some of the things Kai’s doctors discussed with us last week as being a potential option for him very soon, so it was such a privilege to hear this cutting edge information straight from the source!
Dr. Stiles on targeted therapies for LGG

This another amazing opportunity we were able to experience here at camp funded by the PLGA a (pediatric low grade astrocytoma foundation) who sponsored this whole week of camp for us!
I have talked about the PLGA in the past (we did the Christmas ornament fundraiser for them last holiday season, and we are already working on this years design!) but until this week I really had no idea how much they are really doing for our kids! They have been a great source of peer support for me since this journey started, and then again this week at camp, but they have also been instrumental in the latest research and developments for new therapies specifically for kids with low grade brain tumors.
They are a foundation started by a group of parents that are making a real difference in the lives of so many.

PLGA Families Return to Camp Sunshine in 2012

Based on overwhelming feedback, the PLGA Foundation, in partnership with the Lily Fund, will be sponsoring the 2nd Annual Low Grade Glioma Brain Tumor Week at Camp Sunshine from Sunday, July 15th to Friday, July 22nd 2012.

Families from around the world are invited to apply to attend this session. Camp Sunshine is for the WHOLE family. Parents, siblings and patients. And it is FREE (includes food, lodging and all activities).

The camp is a fantastic experience as you are surrounded by new friends and families that understand your journey. Patients, siblings and parents have a great time taking advantage of all of the outdoor activities that camp has to offer including, swimming, boating, fishing, sports, etc. In addition, the camp has a wonderful indoor offering of activities ranging from art, theater, game room, etc. All of the activities are staffed by an enthusiastic group of volunteers who are committed to making your week at camp a memorable experience.

In addition, a Guest Lecturer, one of our leading medical expert in pediatric neuro-oncology, will join us to talk about treatment options, research and leading indicators in finding more effective treatments and a cure for our children battling low grade brain tumors. There will also be other sessions offered for parents, siblings and patients where discussion topics will be pertinent to the low grade community and encourage sharing of experiences and support for each other.

For more information, please go to http://www.campsunshine.org or contact Nancy Cincotta at nancycincotta@gmail.com

Camp Sunshine for Low Grade Glioma Families in 2011

The PLGA Foundation sponsored fifteen families with children who have been diagnosed with low grade brain tumors to attend a week at Camp Sunshine for the first annual Low Grade Glioma Brain Tumor week (July 17th – 22nd). This pilot program was the first of its kind in the nation to focus solely on low grade brain tumors in children. Thirty-four families from fourteen states were able to attend this session.

While the PLGA Foundation is committed to uniting the medical community to jump-start childhood slow growing brain tumor research, we are equally committed to uniting families with loved ones suffering from brain tumors. At Camp Sunshine, the synergy between science, support and advocacy created a stimulating environment for the families. Our hope is that this network will help PLGA families find comfort and support not just during the one week of camp, but throughout the year as well. In addition, we hope that these families will help us raise awareness of and funds for NEW clinical trials and scientific research so we can find new treatments and a cure for children battling low grade glioma brain tumors.

fightPLGA

This evening was the camp celebration show, at which time they told us that they have just posted a new brain tumor session for fall and one for winter and they encouraged us all apply and return to camp again!

I realized in this week that it doesn’t matter if you are staff, volunteer, doctor or families, once you come to Camp sunshine you just keep coming back! As sad as we are to be leaving all of our new friends, and am thankful to have had this opportunity and look forward to coming back for years to come.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s