News

CAC2 Update–March/April 2014

Greetings CAC2 Members,

You will notice by the length of this update that many fine things are happening at CAC2, and I’m looking forward to meeting some of you and re-connecting with the rest at our meeting in Washington DC (the details, including hotel options are below), and I am more excited than ever about our group’s prospects..  
 

I recently re-read this quote from Antoine de Saint-Exupéry, the French writer and aviator, who wrote The Little Prince.    

 “If you want to build a ship, don’t drum up people to collect wood and don’t assign them tasks and work but rather,

teach them to long for the endless immensity of the sea,”

From my observation, the key to collaboration isn’t endless amounts of time and effort trying to foster collaboration through technology, training, and emails.  It’s purpose.  Purpose is collaboration’s most unacknowledged determinant. It’s what let all those engineers bring the crew of Apollo 13 home safely and what it took to get 5000 planes out of the sky and landed in various unscheduled airports after the 9/11 crashes.  It is what keeps our members doing more to help children with cancer and their families every day.

Here is our most recent update of just some of our highlights. 

 

CAC2 Announcements  Items in red request your response or participation.

 

Welcome New Member

Pediatric Brain Tumor Foundation, Asheville NC: www.curethekids.org

CAC2 now has 59 organization members, 16 individual members, and 3 student members.

 

Advocacy Update

A bi-monthly CAC2 Advocacy Track call was held on April 8, with more than 30 participants.  Coordination of these calls is shared by volunteers on the Advocacy Coordinating Council.  Thanks to Beth Anne Baber for moderating this month.

Fifteen presenters shared updates on several initiatives, pieces of legislation, and upcoming advocacy events.  All of us will be called on to serve as advocates at some level.  Take a minute to review the complete meeting notes and stay informed http://cac2.org/cac2-advocacy-conference-call-notes-april-8/.  Presenters’ emails are included in the notes should you have questions or want more information.

Next up – the CAC2 May webinar highlighting Advocacy. Stay tuned for complete details.

CAC2 Summit and Annual Meeting

The CAC2 Summit and Annual Meeting will be held on Wednesday, June 25, 2014 at Microsoft, 901 K Street NW, Washington, D.C.  The official schedule is forthcoming, but tentatively we will convene 8:00 – 8:30 am and wrap up by 4:30.  Following the Annual Meeting, there will be a Board Meeting for the meeting of current and any newly elected board members.  Once the results from Survey Monkey are tallied, we will be seeking speakers and setting the day’s schedule.

CAC2 is planning to host a “Meet & Greet” reception, during the late afternoon on June 24th, after participants in the Childhood Cancer Awareness Days leave the Hill.  Those plans are still pending.

Hotel Options:

The Henley Park Hotel, 926 Massachusetts Ave., NW, Washington, DC 20001 (about a block away from Microsoft), is providing a special rate of $209.00/night for a standard room with one Queen bed.  The maximum occupancy for this room is 2 people.  This room rate extends to arriving on June 24th & leaving on June 26thTo reserve your room at this rate, you may call the Henley Park Hotel at 202-414-0503 and ask for Annual Meeting Courtesy Block or make a reservation online at www.henleypark.com and enter the code CAC2.  Reservations at the Henley Park Hotel will close on Thursday, May 8, 2014 so please make your reservations early. 

For those CAC2 Members who are coming in for the Alliance Awareness Days, June 23 & 24, and are staying at the Residence Inn Marriott in Old Town Alexandria, the hotel has agreed to extend their room rate through June 26th (although the link doesn’t reflect that).  The link for that hotel is:http://cwp.marriott.com/wasra/afcc/ .  Rooms must be booked by June 2 to receive their special rates.

Your will receive your invitation and registration information soon.  Please make your meeting plans!

CAC2 Members In Action

 

Saving Josh

By way of introduction, my name is William Burns, the newest member of the Coalition Against Childhood Cancer.  I found my way to join CAC2 as a result of our organization’s and our member organizations’ heroic efforts to #SaveJosh, my nephew.  I would like to take a moment to tell you Josh Hardy’s story.  A story of how a group of dedicated and tireless pediatric cancer advocates came together to move a mountain.  Thanks to your efforts and the efforts of Josh’s Army, this story has a happy ending.

Josh, who has battled and defeated cancer four times, received a bone marrow transplant at St. Jude Children’s Research Hospital in January of this year.  While recovering from the transplant and completely immunosuppressed, Josh contracted an adenovirus infection.  The virus was ravaging Josh’s body causing kidney, respiratory, and heart failure.  As Josh’s body was so weakened from the transplant and battles with cancer, he could not tolerate the usual antivirals used to treat adenovirus.  The doctors at St. Jude felt that the antivirals would destroy his kidneys beyond repair.  In fact St. Jude’s quality of life team met with the family to discuss alternatives to treatment.

Fortunately, one of his doctors had been the principal investigator on a Phase II pediatric trial for highly effective, low toxicity antiviral drug called brincifodovir made by Chimerix.  Chimerix is a small pharmaceutical company with a very small portfolio of drugs.  The company was completely focused on trying to get brincifodovir through its Phase III adult trial.  It had a Compassionate Release program, but had discontinued it two years ago to focus its resources on getting the drug to market.  When Josh’s doctor, backed by the administration of St. Jude Hospital, attempted to save Josh’s life through access to the new antiviral drug, Chimerix repeatedly said that it wouldn’t release it.

Refusing to take no for an answer, the family begin a social media and media campaign to #SaveJosh.  Soon thousands of people joined Josh’s Army and the campaign went viral.  Leading the charge for Josh were at least ten CAC2 member organizations.  These individuals and organizations worked with singular purpose, each in their own specialized area of expertise, to secure the only chance Josh had—brincifodovir.  Through collaboration, cooperation, and partnership, a creative solution was created in which Josh ultimately received the medication (flown from the company’s laboratory in North Carolina to Memphis) and 19 others would have the opportunity to do so as well.  At the risk of leaving out someone who helped out, I would like to acknowledge these CAC2 members/organizations who I know played a role in helping Save Josh:

Alex’s Lemonade Stand Foundation

Children’s Cause for Cancer Advocacy

Jeff Gordon Children’s Foundation

Jonathan Agin

Kids V. Cancer

MaxCure

PAC2

Lori Boyko

Solving Kids Cancer

The Nicholas Conor Institute

The Truth 365

Vickie Buenger

From what someone explained to me, many of these folks wouldn’t really even know each other if they hadn’t been working with one another over the last three years building and launching CAC2.  The Coalition that came together to #SaveJosh and the successful campaign could not have been accomplished without CAC2.  CAC2 moved a mountain for Josh and on behalf of Josh, his parents, and his entire family, Thank you!

 

Grandparents In Action

Richard Plotkin looked around the room at the CAC2 meeting in DC a few months ago and noticed that most of those attending were most likely parents, mostly of a child who had, or has, cancer.  Then there were those, like Richard, who appeared to be older and presumably were grandparents.  Richard (whose grandson, Max, is a survivor) already knew Joe Baber (also the grandfather of a survivor, Conor) and was introduced to Donna Carmical and Tom Pilko who Richard learned were grandparents of children who passed away from the disease, Declan and Gabby, respectively.  From that meeting, Grandparents In Action (GIA)—with Richard, Joe, Donna and Tom as founding members—was born.  Richard suggested that grandparents were “the forgotten few,” those that most folks do not think of when they think of childhood cancers.  Naturally the children with cancer fall into that category as do their parents, but few recognize the pain afflicting the grandparents who not only witness their grandchildren suffering from cancer, fearing they will die, but also witnessing the angst and stress (physical, emotional, financial) that their children are going through.  We often hear the term, “A parent’s worst nightmare.”  But whoever says, “A grandparent’s worst nightmare”?  The purpose of GIA is to give grandparents directly affected by pediatric cancer a vehicle to express their feelings and communicate with others similarly situated.  Joe Baber established the website (http://grandparentsinaction.com) and it has been up and running for the last few months.  As of March 26th, there were 208 members (208 “likes” on Facebook, there is no official membership).  These 208 individuals will receive all future postings.  Others received and read blogs posted on the site.  A total of 465 visitors read the blogs as of March 26th.

 

Project Updates

 

Hope Portal

The CAC2 Online Resource Guide subcommittee and representatives from Children’s Hospital Los Angeles (CHLA) continue to meet weekly to add enhancements to the Hope Portal (www.searchhope.org).  Since the last CAC2 newsletter, more programming changes have been completed, an official Memorandum of Understanding has been approved, and thanks to the great response from CAC2 volunteers, we now have a CAC2 Review ProcessTeam in place.  This team will vet all applications, in order to ensure that the site is providing accurate information.

We will start testing the enhanced site shortly and expect that the Hope Portal will be ready to add new Resources by May.  We will let CAC2 members know as soon as online applications are available.  If you would like further information about the Hope Portal, please contact: Jennifer Louis (jlouis5678@aol.com) or Diane Moore (diane.moore@mefinefoundation.org).

 

CureFest

CureFest for Childhood Cancer will be held in Washington, DC on September 21, 2014 from 9:00 a.m. – 1:30 p.m.  This is an excellent is an opportunity for the childhood cancer community and the general public to stand together as once voice against childhood cancer. In a recent survey, 68 of 69 CAC2 members expressed support for CureFest.

CureFest will benefit the childhood cancer movement as a whole by providing a national signature event.  The goal is to translate this awareness and mobilization into more funding for childhood cancer research.  To date, over 85 childhood cancer foundations and groups are planning to participate and the final number is expected to be 150 or more.

The event includes an organized walk from the Washington Monument to the U.S. Capitol and back.  There will be an optional fundraising component and participants are able to raise money for the childhood cancer-related charity of their choice.  Organizations will have table displays that will educate the public about their individual missions and childhood cancer in general.

CureFest is a family-friendly event with games and activities for all ages.  The event includes speeches by prominent pediatric oncologists, elected leaders, as well as children and adults impacted by childhood cancer.  There will be a master of ceremonies and live entertainment.  Numerous dance studios and scouting troops also plan to participate in a coordinated “smart mob” performance.

The cost of the event will be $30,000 – $50,000 and will be funded by corporate sponsors and an online auction to be held this summer.  Major expenses include police for road closures and event rentals (stage, tents, tables, chairs, fencing, portable restrooms, etc.).

There are several volunteer opportunities: Planning Committee, Marketing/Communications, Website Development, Registration, Volunteer Recruitment/Coordination, Speakers, Games and Activities, Entertainment, Medical Tent, VIP Tent, Fundraising.  Assignments will be filled in late April.

The CureFest website is in development and will be launched in May.

For more details or to get involved, please contact Mike Gillette at mike@thetruth365.org.

 

Evergreen Childhood Cancer Event Map

The Childhood Cancer Event Map project will be lead by CAC2 member, Angie Giallourakis.  The team’s goal will be to create an informative and compelling online map showing childhood cancer event locations and descriptions.  The Project Team includes Jay Scott, Brian Riggs, Dawn Norman, Lance Thayer, Lauren Roadman, and Bob Piniewski.  The team is evaluating your input from the survey, looking at the best ways to input and visualize the data, and how to integrate it with the CAC2 website.  They will have the evergreen map launch in September in conjunction with Childhood Cancer Awareness Month.

There’s still room on the project team if you want to be involved – if you are interested please contact Angie at angie@fightconquercure.com or 216-387-2681.

Research Database

One of the initiatives early on in the organization of CAC2 was to provide its members with access to a searchable research database.  The Research Committee formed to explore this idea vetted third party resources and the cost of starting a new database.  This committee’s recommendation was to use the existing database housed and managed by The International Cancer Research Partnership (ICRP).  Recently, CAC2 has received a $7500 grant from GSK to become a member of the ICRP so we are ready to move forward with the next steps!

What you need to know: The ICRP contains information on approximately 60,000 cancer research grants from over 80 funding organizations.  With access to this searchable database, members will be able to get a better understanding of the childhood cancer research landscape, nationally and internationally.

What you need to do: Members of CAC2 will be asked to upload their research projects into the database to make it a stronger tool, so be on the lookout for accessibility information and ways to upload your funded projects.  Also, if you are interested in getting involved in this project, speak up!  We are looking for volunteers to help organize the next steps of implementation and beta test uploading research projects.  If you are interested, please contact Lisa Towry at LisaTowry@alexslemonade.org.

 As always, we welcome your feedback and ideas.

 

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