Events

September Is Childhood Cancer Awareness Month

There is a movement happening in our country.

A movement to increase public awareness about Pediatric, Adolescent and Young Adult Cancer.

Part of that movement is currently involved in the establishment of a centralized event calendar to inform the public about upcoming Childhood Cancer Awareness Programs.

 Please take a moment and visit this link:

 http://curechildhoodcancer.ning.com/page/pac2-september-2012-national-childhood-cancer-awareness-event-cal?xg_source=msg_mes_network

And learn what programs are taking place in your community!

WE WON’T REST UNTIL THERE IS A CURE!

FIGHT! CONQUER! CURE!!!

First Descents Provides Life Changing Experience for Steve G!

From the First Descents Website: “During the First Descents experience, young adult survivors and fighters are empowered through conquering legitimate outdoor challenges to push their limits and face their fears, and by doing so, they are able to regain the confidence and self-efficacy lost to cancer. First Descents places an emphasis on each individual’s experience and provides the right support for every participant to achieve their goals for the week.  The experience is designed to allow healing to happennaturally and organically – no forced conversations and no structured group sessions or therapy.” Visit First Descents at : www.firstdescents.org

The Steven G AYA Cancer Research Fund supports opportunities for YA Cancer Survivors to regain that sense of control that is often lost due to Cancer.

Using those newly learned skills!

Enjoy some of Steve’s photos courtesy of First Descents!!!

While kayaking Steve didn’t have time to think about the effects of cancer and cGVHD!

Survivorship: Pediatric, Adolescent, and Young Adult Cancer Survivorship Act

Background

There are over 350,000 survivors of childhood cancer in the United States today. Two-thirds of these individuals are likely to experience at least one late effect of treatment, and almost one-fourth will face a late effect that is serious or life-threatening. Childhood cancer survivors may face a range of late effects of their disease and treatment, including second cancers, heart and lung damage, osteoporosis, financial pressures, psychosocial issues, employment and fertility problems.

A 2003 Institute of Medicine (IOM) report titled, “Childhood Cancer Survivorship: Improving Care and Quality of Life” (co-edited by the founder of the Children’s Cause. To order this document visit https://download.nap.edu/catalog.php?record_id=10767&utm_source=Network&utm_medium=Widgetv2&utm_content=v2&utm_campaign=Widget ) analyzes issues around care for this population and proposes a policy agenda that would improve health care delivery, strengthen investments in education and training, and expand research around late effects and health disparities. Legislation to improve the long-term outlook for survivors of childhood cancer has been introduced in Congress and is derived from the IOM report recommendations.

 

Legislation
Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act

On September 22, 2011, Senators Jack Reed (D-RI) and Kay Bailey Hutchison (R-TX) and Representatives Jackie Speier (D-CA) and Michael McCaul (R-TX) introduced the Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act (S.1613/H.R.3015). This legislation will:

  • Develop pilot programs to evaluate model systems of care and identify the most effective ways to provide follow-up care to childhood cancer survivors;
  • Enhance research to ensure that the late effects of new therapies can be followed effectively;
  • Create grants to establish comprehensive long-term survivorship clinics to improve access to follow-up care; and
  • Convene a workforce of educators, advocates and providers to develop models in relevant psychosocial services, establish curricula for continuing education, and strengthen the emphasis on psychosocial care for childhood cancer survivors.

CCCA Role

Children’s Cause for Cancer Advocacy (CCCA) worked closely with Members of Congress and Congressional staff to craft provisions and garner Congressional support for the introduction of the Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act. CCCA is committed to advancing this critical legislation to improve the care and quality of life for survivors of childhood cancer by meeting with Congressional staff, educating members of Congress, advocates, other childhood cancer groups and the public about the importance of this bill to the care and quality of life of survivors of childhood cancer.

On March 26, 2012, the Alliance for Childhood Cancer sent a letter to Members of Congress supporting the legislation. The letter included CCCA’s signature, as a member of the Alliance.

Take Action to Ensure Funding for Childhood Cancer Data Collection and Reporting Activities

March 14, 2012

Jump to Action Alert

Dear Childhood Cancer Advocate:

On March 13, Senators Jack Reed (D-RI) and Johnny Isakson (R-GA) sent a letter to Senate Labor, Health and Human Services, and Education Appropriations Committee requesting funding for childhood cancer surveillance activities in the fiscal year (FY) 2013 appropriations bill. We are asking for your support in this effort – please contact your Senators and ask that they sign Senator Reed and Isakson’s letter.

The Reed-Isakson letter specifically asks that the committee provide funding to improve childhood cancer surveillance conducted by the Centers for Disease Control (CDC).  These efforts enable researchers to monitor trends and incidences of childhood cancer to better understand the disease, ensure appropriate treatment, and track long-term health outcomes.  These goals are consistent with the Caroline Pryce Walker Conquer Childhood Cancer Act, which was signed into law in 2008.

The Labor, Health and Human Services, and Educations Appropriations Committee has provided funding to the CDC for these activities in the past, which has helped states transform information technology infrastructure through the expansion of electronic reporting.  This activity has allowed researchers to rapidly report critical information to state cancer registries.  Capturing this data will expand our knowledge about childhood cancer patterns – including diagnoses, treatments, and survivorship – and ultimately enhance treatment for children with cancer.

Please take action today by contacting your Senators and urging them to sign Senator Reed and Isakson’s letter in support of funding for childhood cancer surveillance by filling out the form below.

Thank you for adding your voice to this very important cause.

Sincerely,
The CCCA Team

Last year’s NE Ohio CureSearch Walk

Here’s to our Heroes!

Congratulations to Dr. Jeffrey Auletta and Clinical Nurse Practitioner Barbara Humrick for being awarded as Crain’s Cleveland Healthcare Heroes! The event took place yesterday, May 23rd, 2012 at Landerhaven.

We are honored to know such dedicated Pediatric Oncology Professionals!

 

Family and Friends of Jeff and Barb joined in the celebration!

 

Barb Humrick, CNP and Jeff Auletta, MD Nominated for Crains Healthcare Award!

We are proud to announce that Rainbow Babies & Children’s Hospital’s Clinical Nurse Practitioner Barbara Humrick and Pediatric Oncologist Dr. Jeffrey Auletta have been nominated for the Cleveland Crains Health Care Award!

Please join us in congratulating our dear friends and dedicated Pediatric Oncology Professionals! For more information about Barb and Jeff please click on the link below.

Barb&JeffCrains

CAR WASH RAISES $2500 FOR AYA CANCER!!!


Many thanks to Don and Cindy Sears, owners of #1 Express Car Wash in Westlake, Ohio for their generosity in allowing us to promote and raise money for AYA Cancer Research!

Thanks to our volunteers for donating their time and energy in making this event a success! (Couldn’t have done it without you!!!)

Our volunteers were: Tina Poulos, Tommy Poulos, Billy Abersold, Timmy Chrisman, Allie Asimakis, Elaina Chiviles, Gabriella Kariotakis, Shawn Rae, Marci Kniss, Harry, Nick, Phil and Steven:)

And of course,,,,thank you to the many generous people who contributed to the Steven G AYA Cancer Research Fund. We were humbled by your generosity!

 

NFL Draft Benefit for Cancer Patients

JOIN THE PARTY!!!

Thursday, April 26 from 6:00-11:00pm
Clevelander Bar & Grill
834 E. Huron
Cleveland, Ohio 44115

All donations from this fund-raiser will benefit cancer patients!

Come out to our NFL Draft Party Fundraiser benefiting the KEM Cancer Foundation for only $50. That includes all you can eat and drink while enjoying the NFL Draft at The Clevelander. There will also be a Chinese raffle and a 50/50 raffle. All the money will go to both Karen Cares “A Day of Sanctuary for Women with Cancer” and Healthy Spaces, as well as, cancer research. There will also be an NFL Draft game. The game goes like this:

With The NFL Draft game you will need 32 singles to play and each pick is a $1. Your pick must be written on the numbered line before Roger Gooddell, NFL Commissioner, gets to the podium. You will hear, “Pens down.” To win you have to be the only person to pick the correct player. If more than one person has the correct pick, it is a “tie.” No one wins the pot. The money will roll over and continue into the next pick. You must be checked in at least 30 minutes before the start of the Draft to participate.

DONATIONS: You can make your $50 donation at the door, here on www.gofundme.com/gc4wk, or make them on the KEM Cancer Foundation website, www.kemfoundation.org

For more information contact Nathan Mumford @ (216) 214-8691

EMILY’S RAINBOW RUN AND FAMILY WALK IS APRIL 29TH, 2012

JOIN US ON SUNDAY, APRIL 29TH, 2012

Click on the link below and register to walk or run for a wonderful cause!!!

WWW.EMILYSRAINBOWFUND.ORG

SEE YOU THERE!!!

FDA’S Webcast On Drug Shortages Today!

Here is an opportunity to learn about the progress being made by the FDA on Drug Shortages affecting PAYA Cancer Patients and their families.

You can either visit the website as linked below  (and sign in as Guest) or telelphone in at 888-390-0924 (pass code is FDA).

https://collaboration.fda.gov/externalaffairs/

 

This is a listen only opportunity.

 

Thanks,

Angie

GvHD National Symposium 2011

 

FRIDAY, NOVEMBER 4TH

RENAISSANCE CLEVELAND HOTEL

CLEVELAND, OHIO

PLEASE CLICK ON LINK TO VIEW AGENDA

FINAL AGENDA 11.4.11 (2)

 

This is an important event for anyone interested in learning more about Acute or Chronic Graft Vs. Host Disease.

GvHD is a serious, and sometimes life threatening condition that can occur following a Bone Marrow Transplant, which is a life giving procedure for the treatment of Serious Blood Disorders such as Acute Myelogenous Leukemia (AML)

or Acute Lymphocytic Leukemia (ALL).

 

This program is for professionals, survivors, and families.

There will be a Physician and Patient Track.

To register visithttp://cowdenfoundation.org/