CureSearch Leaders and Activists

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CureSearch Leaders and Activists

This group will keep up with the political and other related advances of the childhood cancer front. As team leaders and activists, we will come together to update each other as well as the rest of PAC2 on what we can do to push CureSearch efforts.

Website: http://www.curesearch.org
Location: Washington, DC
Members: 79
Latest Activity: Feb 21, 2012

Discussion Forum

Elise's Story

Started by Kate Krause. Last reply by Paula Mella Jan 31, 2009. 1 Reply

Thomas's story

Started by Lisa Molina Jan 29, 2009. 0 Replies

Zach's Story

Started by Jenny Willis Jan 28, 2009. 0 Replies

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Comment by Donna Criner on December 4, 2009 at 10:06am
PLEASE HELP ARMS WIDE OPEN SAVE KYLER’S LIFE
Dear Friends,
This morning as I rolled over to hit the snooze button on my alarm clock, I noticed the red light flashing on my Blackberry. Groggy and bleary-eyed, I reached over to see what messages awaited my response. There were two. The first was inspirational, about how every action we take, no matter how seemingly small, matters because, good or bad, our thoughts and our actions are like “stones dropped into still waters, causing ripples to spread and expand as they move outward,” and how just one of those ripples, negative or positive, could become a tidal wave. I pondered this thought for a moment, the idea that individually we all have the capacity to make a huge impact, but if we combine our efforts, collectively, we can change the world. Then I opened the second email. This was the stone.
The Stone:
My friend Jennifer emailed me an article about the VanNocker family that was written by Ronnie Polaneczky for the Philadelphia Daily News entitled “The Insurance Company vs. Kyler’s Life.” http://www.philly.com/dailynews/top_story/20091202_Ronnie_Polaneczk... Five-year-old Kyler VanNocker was diagnosed with Neuroblastoma at the age of two-and-a-half. After enduring a year of treatment at St. Christopher’s Hospital for Children and Children’s Hospital of Philadelphia that included a seven-month stay inpatient and complications that resulted in kidney failure as well as heart, lung and liver disease, Kyler finally went into remission in September 2008 and was able to experience “normal” childhood once more. Neuroblastoma is a very aggressive type of cancer, however, and ten weeks ago, follow-up tests revealed Kyler’s cancer had returned. Part of what makes this particular cancer so relentless is that recurrent Neuroblastoma involves a different type of treatment protocol than an initial diagnosis, and Kyler’s oncologist determined that the only effective treatment option for Kyler is MIBG Therapy. MIBG Therapy is a clinical trial, much like the 3F8 treatment that Baby Billy is currently receiving. But please keep in mind that because there is no cure for Neuroblastoma, these clinical trials are the standard of care and the only chance these children have for survival. Kyler’s insurance carrier, HealthAmerica, does not seem to understand that, however, and despite the doctors’ recommendations, has denied coverage for the therapy because it is experimental and investigational in nature and is not yet approved by the Food and Drug Administration. Out-of-pocket expenses have left the VanNockers bankrupt. Without this procedure, Kyler’s only option is to receive Hospice Care and he will be sent home to die a slow and agonizing death.
The Ripple:
I immediately called Dena Sherwood, a good friend of mine and the mother of two-year-old Baby Billy who was diagnosed with Stage IV Neuroblastoma in July 2008, who, along with her husband Billy Sr., founded the non-profit organization Arms Wide Open Childhood Cancer Foundation, Inc. www.awoccf.org
For those of you privileged enough to know The Sherwoods, you will not be surprised when I tell you Dena has a plan to help.
The Plan:
Dena’s plan was triggered by the story of Noah Biorkman, a five-year-old who was diagnosed with Neuroblastoma in 2007 at the age of three, who went into remission, but then relapsed in September of 2008, the very same month that Kyler VanNocker went into remission. http://www.mlive.com/news/detroit/index.ssf/2009/11/diana_biorkman_...
When Noah’s mother, Diana Biorkman, posted an article on a CarePage site asking people to send Christmas cards to Noah so they could celebrate the holiday early due to Noah’s declining health, what followed was a FaceBook page, a television crew, and an outpouring of love – and Christmas cards arriving in their Michigan home. One day they received 64 cards. The next day, they received 80,000. Sadly, after a long battle with Neuroblastoma, Noah passed away on November 23rd, but not before receiving 1,000,000 Christmas cards!
The Tidal Wave:
Because this endeavor was so successful, Arms Wide Open is asking you for a repeat performance – but with a twist. Instead of sending a $2.99 Christmas card to Kyler, we are asking for each of you to donate $1.00. That’s it. It is amazing how connected this world has become because of the internet, and if you contribute $1.00 and pass on this email to everyone in your address book and they contribute $1.00, collectively, we can buy the VanNockers time and send them enough money to pay for Kyler’s next MIBG treatment. Changes need to be made to the healthcare system in the United States, and it is an atrocity when an insurance company puts a dollar amount on a child’s life, but this change with insurance companies and legislation and lawmakers is a slow process and, unfortunately, time is not a friend to any of these children battling Neuroblastoma. We know times are tough, but $1.00 is not a lot to ask for and when you add that to the other dollars, IT WILL SAVE A LIFE. Please look under your couch cushions, under the floor mats in your car, the bottom of your pocketbooks, and please tell everyone you know to do that as well, because every dime counts, every second counts, and every single one of you count. If this was your child, would Hospice be acceptable?
We didn’t think so. Give the gift of life this holiday season.
The Address:
Paul and Maria VanNocker
115 East Franklin Avenue
Edgewater Park, New Jersey 08010
With Hope,
Tracy Neilson,
Vice President, Arms Wide Open Childhood Cancer Foundation, Inc.
What a wonderful way to help!
Comment by Angie Giallourakis on October 18, 2009 at 11:10pm
I hate to complain, but I really wish that there was more awareness about childhood, adolescent and young adult cancer...
I realize that you have to start small...but when is is going to change?
Comment by TIna White on October 15, 2009 at 12:23am
THanks for the invite. Happy to help and support all of these courageous children and their families. Prayers and strength to all.
Comment by Angie Giallourakis on October 14, 2009 at 3:42pm
Just invited 400 people to join this group. Let's hope they respond. Have a nice day...
Comment by Alesia Shute on October 14, 2009 at 12:12pm
Glad to be a part of this group. Surviving colon cancer at age 7 I am now 48 and very healthy. I have written a book of my memoirs and am donating the profits to Childrens Hospital of Philadelphia. To learn more about my story visit me at everythingsokaybook.com
Comment by Angie Giallourakis on October 13, 2009 at 11:25pm
As a result of our son Steven's cancer: he is a two time survivor. First stage four osteosarcoma and then secondary AML...we have created the Steven Giallourakis AYA (adolescent and Young adult) Research Fund at Rainbow Babies and Children's hospital in Cleveland. We hope to have a fundraiser in January 2010.
Comment by TO SAVE SEALS on October 8, 2009 at 5:31pm

Comment by Lisa Molina on February 28, 2009 at 7:35pm
Please see my new post in the Main Forum about contacting the NCI about allocating some of the money it is receiving from the stimulus package for pediatric cancer research. We can't let our kids be left out of this opportunity!
Comment by Kate Shafer on February 9, 2009 at 12:32pm
Dear PAC2 Advocates,

Feb 2-3 CureSearch hosted the fifth annual Team Leader meeting in DC. The meeting was very well attended with 47 Team Leaders representing 30 states. Several new Team Leaders have come to CureSearch through PAC2 postings and I am grateful for this group resource.
As in past years we provided a background training for new Team Leaders, a welcome reception so the group could meet and mingle and we had a presentation by a senior staffer from Congressman Chris Van Hollen's office. Tuesday morning came more training and an unprecedented 250 meetings with members of Congress. In reviewing the feedback information from Team Leaders following each meeting I was so pleased to see that, with the exception of freshman members, that CureSearch is a "household name" in Congress and that the response to our requests was generally very favorable.
This year we are asking two specific things of members of Congress:
1) Will they submit a request for appropriations to support the research of the Children's Oncology Group
2) Will they sign on to a "Dear Colleague" letter that will be circulated in the next few weeks, to the Chair and ranking member of the Labor, Health and Human Services appropriations subcommittee to include funding for the Caroline Pryce Walker Conquer Childhood Cancer Act in the FY2011 budget.

I will provide additional, specific information about the appropriations requests in a guest column on this site as well as post letters that specifically address this issue that can be accessed through the Contact Congress icon to the right on this page.
I thank each of you for your help and your support as we "kick-off" the current legislative year.
Comment by Carrie Black on February 8, 2009 at 8:05pm
So, For those that were in DC last week, how did your meetings go? Mine were, generally, great. We have a senator that is now and will forever be a no. But the rest of the Oklahoma delegation is on board. Our other senator said that he would do anything we need. :)
 

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Coalition Against Childhood Cancer

PAC2 is proud founding member of the Coalition Against Childhood Cancer!

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Discussion Forum

Elise's Story

Started by Kate Krause. Last reply by Paula Mella Jan 31, 2009. 1 Reply

Thomas's story

Started by Lisa Molina Jan 29, 2009. 0 Replies

Zach's Story

Started by Jenny Willis Jan 28, 2009. 0 Replies

My message for the leaders to share

Started by rob whan Jan 27, 2009. 0 Replies

Curesearch Texas

Started by Julian's Daddy. Last reply by Lisa Molina Jan 24, 2009. 5 Replies

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