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Tag Archives: childhood cancer advocacy

What September Means to Me: by Melinda Marchiano

goldribbonby Melinda Marchiano, Childhood Cancer Advocate

 

September is a slow and mesmerizing free-fall.  It is a sobering, coming down from the carefree adrenaline of summer, and the distant hope of a season not quite yet arrived.   It promises two things—a somber end to summer’s sweet extroversion, and the commencement of a season marked by a period of comforting investment in one’s own heart.  Spirit’s fire settles.  Passionate flames retreat, tucking their energy into the folds of a quieting soul.  They hold within them the elation of the summer, and the bitter parting from what they knew could not last forever.  Yet their amber glow pulses with the hope of a time to come, a time where they reignite and fill their intended purpose, and light their predestined corner of the world.  To me, September is a recharging of the soul—recognition of what has come to pass, and the settling into a hopeful incubation for the work that lies on the horizon.

 

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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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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.

 

 

 

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 Cancer Association (CCA)

 

Children’s Cancer Association (CCA) is a national leader providing free, innovative programs of JoyRx and has connected hundreds of thousands of children, teens, and their family members to the power of hope, comfort, and happiness in the last two decades.

CCA didn’t start with a foundation, it started with a family. One who faced its own battle with serious pediatric illness in Portland, Oregon. From that experience came a passionate focus on the moment, and a commitment to deliver immediate help to kids when their need is the greatest.

We prescribe joy. CCA knows that in the fight against devastating illness, joy is often forgotten and something every child deserves. When seriously ill children, teens, and their families need more than medicine, CCA’s innovative programs create joy one moment at a time.

JOYRx.org

“Kids deserve long wonderful lives. Or at the very least, short wonderful lives. One day kids who are diagnosed with cancer or terminal illness will be delivered an inexhaustible infusion of JoyRx alongside traditional treatments and state-of-the-art medical interventions. Making room for JOY in the moments between life and death will change lives for the better – yours, mine, ours.”

Regina Ellis, CCA Founder and CEO