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Tag Archives: childhood cancer awareness

The Mad Dash Towards September: Childhood Cancer Awareness Month

GoldRibbon2by Jonathan Agin, CKN Childhood Cancer Awareness Co-Editor

 

For those of you who are aware of the significance of September for the childhood cancer world, you are no doubt conscious of the flood of gold and the social media deluge that has begun.  Despite the fact that children are diagnosed with cancer 365 days a year, for thirty of those days the community is pressed into a frenzy to grab as much attention and awareness as possible to overcome the lack of focus on the number one disease killer of our kids.  Buildings, bridges, monuments; they are all targets for a steady stream of gold lights used to illuminate them for the world to see in an effort to make even just one more person aware.  It is a stark reality that the world turns pink rather abruptly, and in many instances right under our noses, before the calendar pages say October.

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The Failed Arms Race of Childhood Cancer

FailedArmsRaceby Jonathan Agin, CKN Section Editor

 

Imagine for just one minute this scenario:  A super-power sending its soldiers off to defend itself with 18th century muskets against a very well armed foe.  Would we be so ignorant as to think that these soldiers would stand a chance?  Of course not.  It would be nothing short of a complete slaughter.  So, why are we arming children fighting cancer with weapons that are in some cases forty to fifty years old?  Then, five, ten or even twenty years down the road, when the “survivors” end up with long-term health issues, or worse yet, die or contract secondary malignancies, why have we labeled these kids as cured in the first place.

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Altering the Message of Childhood Cancer

JonathanAgin2by Jonathan Agin, CKN Section Editor

I was never very good at math.  Point of truth, as I was preparing to walk down the aisle right before high school graduation in 1989, my then math teacher and vice principal, put his rather frightening hand on my shoulder and told me he had some advice.  With all the conviction of someone who thought he was doing me a favor, he told me that I should never again take another math class.  Somehow, I got through undergrad and then law school while heeding that gentle recommendation.  Fast forward to 2008 and my then twenty-seven (27) month old daughter Alexis is tragically diagnosed with DIPG, a rare brain tumor that is almost universally fatal in ninety-nine percent of the children who are diagnosed with the disease.  We were not so fortunate as to have been given one of the “better” cancer diagnoses, if you can even meld those words into the same sentence.  Alexis outlived the prognosis by about twenty-one months, battling with amazing grace and courage until she was just two weeks shy of her fifth birthday.  On January 14, 2011, my daughter became one of the many children who do not fit within the often-overstated statistic of an eighty to eighty-five percent overall survival rate for childhood cancer.

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September is Childhood Cancer Awareness Month: Go for the Gold

goldribbonAs part of CKN’s commitment to raising awareness about Childhood Cancer, we invited various organizations to join our “Childhood Cancer: Go for the Gold” campaign.  We feel the time has come to join together and unite in the effort to increase public knowledge about childhood cancer through the Gold Ribbon Symbol and September: Childhood Cancer Awareness Month.

Please join us as we come together to give a voice to the children who are silently fighting this deadly disease.  Like us on Facebook so you receive our powerful line-up of articles this month – and please share them with your contacts to spread the word.

 

Today’s Feature:  CURE Childhood Cancer Association

 

 

CURE Childhood Cancer Association was formed in Rochester, NY in 1976 by a group of parents who lost their children to cancer. They wanted to provide support to parents going through the same experience, as well as raise money for cancer research. Today, CURE is the only organization in Rochester focused solely on meeting the emotional, social, financial, and educational needs of children diagnosed with cancer and chronic blood disorders.

CURE Childhood Cancer Association is a nationally recognized innovator in peer to peer support for families with children diagnosed with cancer and blood disorders. CURE has a commitment to families and children from in and around the Rochester area who are facing the effects of childhood cancer.

Mission Statement:

“Improving the lives of children and their families coping with childhood cancer or chronic blood disorders by providing emotional, educational, social and financial assistance; promoting and funding research toward a cure.”

UPCOMING EVENTS IN SEPTEMBER:

CURE’s 4th Annual Walk and 5K September 7th
CURE’s 11th Annual CURE Kids Classic Golf Tournament September 16th
Recipe For A CURE October 6th

CURE’s website: www.curekidscancer.com

 

 

 

September is Childhood Cancer Awareness Month: Go for the Gold

goldribbonAs part of CKN’s commitment to raising awareness about Childhood Cancer, we invited various organizations to join our “Childhood Cancer: Go for the Gold” campaign.  We feel the time has come to join together and unite in the effort to increase public knowledge about childhood cancer through the Gold Ribbon Symbol and September: Childhood Cancer Awareness Month.

Please join us as we come together to give a voice to the children who are silently fighting this deadly disease.  Like us on Facebook so you receive our powerful line-up of articles this month – and please share them with your contacts to spread the word.

 

Today’s Feature:  Ontario Parents Advocating for Children with Cancer (OPACC)

 

Ontario Parents Advocating for Children with Cancer (OPACC) is a registered charity whose overall goal is to be the parent voice for families with children diagnosed with cancer across the Province of Ontario. Established in 1995 and a charity since 2006, OPACC is comprised of parents, guardians, survivors, or close relatives of a child/teen diagnosed with childhood cancer. Our primary focus in helping these families is the Parent Liaison program, which is already operating at The Hospital for Sick Children in Toronto.  Parent Liaisons are professionals and parents who have already undertaken a childhood cancer journey and understand the impact a diagnosis has on the entire family. They help parents from a non-medical point of view and can help direct them through the myriad of services and opportunities that exist for families both in and out of the hospital. They offer drop-in support groups, one-on-one visits to families, distribution of free support materials, and more. In addition to the in-hospital support provided through our Parent Liaison program, OPACC also works with local community groups across the Province to build a network of local community-based Parent Support groups to ensure that families are supported once they are back home. As OPACC grows, we will continue to establish more Parent Support Groups throughout Ontario, as well as bring our Parent Liaison Program to other Pediatric Cancer Centres.

 

This September, we are running a Parent Facilitator training course in Toronto for those interested in becoming facilitators for new or existing childhood cancer parent support groups, and we are also hosting the Toronto location of the National Inside Ride Tour in October to raise funds for support and awareness for childhood cancer.

http://www.opacc.org

 

 

 

September is Childhood Cancer Awareness Month: Go for the Gold

goldribbonAs part of CKN’s commitment to raising awareness about Childhood Cancer, we invited various organizations to join our “Childhood Cancer: Go for the Gold” campaign.  We feel the time has come to join together and unite in the effort to increase public knowledge about childhood cancer through the Gold Ribbon Symbol and September: Childhood Cancer Awareness Month.

Please join us as we come together to give a voice to the children who are silently fighting this deadly disease.  Like us on Facebook so you receive our powerful line-up of articles this month – and please share them with your contacts to spread the word.

 

Today’s Feature:  Children’s Brain Tumor Foundation

 

Children’s Brain Tumor Foundation is a non-profit organization whose mission is to improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors. CBTF was founded in 1988 by dedicated parents, physicians and friends.

CBTF offers a wide range of support services for families, survivors and bereaved families. The Family 2 Family mentoring program matches newly diagnosed families with caregivers, survivors, or bereaved families.

Family activities include the Kid’s Cruise, Big Apple Circus and annual holiday parties along with other events and opportunities throughout the year to connect families and survivors.

CBTF offers camps at Happiness is Camping in Hardwick, New Jersey: a Family Camp, and the Just Us: Dad and Survivor Camp.  CBTF also holds The Heads Up Conference for teens and young adult survivors at Camp Mak-a-Dream in Gold Creek, Montana.

Hospitals and individuals can request complimentary educational materials.

Please visit our website (www.cbtf.org) for details on any of our programs and events or email info@cbtf.org for any inquires or to speak with one of our social workers.