People Against Childhood Cancer (PAC2)

People Against Childhood Cancer (PAC2) PAC2 - "One Voice United Against Childhood Cancer!" PAC2 is grassroots, volunteer operated and does not raise funds; PAC2 has no operating budget and is independent.
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PAC2 does not duplicate or compete with the efforts of organizations that are members. PAC2 was founded in 2008 to provide the childhood cancer community a place to share information, connect and support the mission of curing childhood cancer. It has since grown to over 6,000 members, including nearly 100 childhood cancer organizations. PAC2 provides a national forum for sharing information and news and continually supports and promotes the efforts of all childhood cancer organizations. PAC2 is operated by volunteers, does not raise funds, has no operating budget and is independent. PAC2's overall mission is reflected in its slogan “One Voice United Against Childhood Cancer.”

www.PeopleAgainstChildhoodCancer.org

PAC2 does not duplicate or compete with the efforts of organizations that are members. PAC2 was founded in 2008 to provide the childhood cancer community a place to share information, connect and support the mission of curing childhood cancer. It has since grown to over 6,000 members, including nearly 100 childhood cancer organizations. PAC2 provides a national forum for sharing information and news and continually supports and promotes the efforts of all childhood cancer organizations. PAC2 is operated by volunteers, does not raise funds, has no operating budget and is independent. PAC2's overall mission is reflected in its slogan “One Voice United Against Childhood Cancer.”

www.PeopleAgainstChildhoodCancer.org

Operating as usual

This exercise was not to take away from the doctors and researchers doing great work for our kids or to discourage anyon...
09/18/2020
Coalition Against Childhood Cancer

This exercise was not to take away from the doctors and researchers doing great work for our kids or to discourage anyone. I think it shows the REALITY of childhood cancer. IMHO childhood cancer is misrepresented when we talk about an 85% "cure" rate. And, I think that misrepresentation diminishes the perceived need for better treatments, which can then lead to truly tragic consequences when it comes to funding more research; which is the only way we'll finally fix this tragedy of childhood cancer.

Thank you to CAC2 Member Bob Piniewski of People Against Childhood Cancer (PAC2) for this important guest blog post.

"This essay analyzes some familiar childhood cancer statistics and attempts to draw them together in a holistic way to estimate the projected lifelong outcomes for a child diagnosed with childhood cancer in the United States today. By lifelong outcomes, we mean what may happen over that child’s entire life–not just today or in five years, but 10, 20 or 30 years from now (which is about as far as the data will let us project).

Why do this?

Children have their whole lives ahead of them, so life-long outcomes carry more weight and meaning than the commonly tracked and quoted '80-85% survival rate' that identifies that proportion of children still alive five years after their initial diagnosis. Children who die as a result of their cancer beyond this 5-year milestone, those who develop secondary instances of cancer, and those who experience chronic life-threatening health conditions caused by their cancer treatments are NOT accounted for in a five-year survival rate statistic.

The five-year survival rate is not enough because, we all want to plan for our child’s future. College. Marriage. Having kids of their own. We want our children to live and prosper for more than five years! No one is satisfied when a child diagnosed at age two lives just past age seven! Our goal can ONLY be that any child diagnosed with cancer lives a normal lifespan not struck short by premature death from being 'cured' or hampered by the burden of chronic health conditions."

Read the full post:
https://cac2.org/an-estimate-of-the-long-term-outcomes-for-children-with-cancer/

PLEASE take 3 minutes to support the most comprehensive legislation ever for our cancer kids: The STAR Act.Do it now! (p...
09/09/2020
Support Full Funding for the Childhood Cancer STAR Act

PLEASE take 3 minutes to support the most comprehensive legislation ever for our cancer kids: The STAR Act.

Do it now! (please)

https://www.votervoice.net/ChildrensCause/campaigns/77099/respond

In July, the House of Representatives passed a bill that included full funding for the Childhood Cancer STAR Act for a third year. Now, during Childhood Cancer Awareness Month, we call on Congress to finalize this funding so the programs...

09/09/2020

September is Childhood Cancer Awareness Month
Day 9 – What advocates are saying.

Many moons ago, PAC2 held an interview series with leading childhood cancer advocates and organizations. Much of what they said is true today, and continues to be inspiring. We wanted to share some of those quotes.

Coalition Against Childhood Cancer

Let’s Imagine a World Without Childhood Cancer!

Jeff Gordon Children's Foundation - Jeff Gordon
"I’ve definitely changed from my experiences with meeting children that are affected by cancer. It’s heartbreaking -- yet inspiring at times to witness their resolve in this battle. Now that I am a parent I can better understand what the parents of children with cancer are feeling. I will say that with almost all the kids I have met, they have always been extremely strong and resilient and that inspires me. Most of the time, you would never even know they weren’t feeling well or having a bad day. I know the importance of giving back and if I can help to change their lives by funding research or treatment efforts, then I am going to do that."

CureSearch
"The marketplace for philanthropic giving is very crowded, and adults typically give to issues and causes that affect them personally – so breast cancer, prostate cancer, heart disease garner more attention. Yet, 13,500 children and adolescents are diagnosed with cancer each year, so we must redouble our efforts to get the word out about the need for increased funding."

Rally Foundation for Childhood Cancer Research - Dean Crowe
"Collaborating is very important for Rally and for the childhood cancer community. I know that you and I agree that we’re stronger as one than as individual parts. We all have the same goal, so finding ways to work together is fundamental to finding better treatments and cures faster."

St. Baldrick's Foundation - Kathleen Ruddy
"Is it efficient to take ten years to do something, when we could do it in half the time with greater resources? In our community, the consequences are children’s lives, and we cannot put a dollar value on them.

In 1961, when President Kennedy challenged America to send a man safely to the moon and back by the end of the decade, he didn’t say, “but only if we stay within a certain budget.” The goal was the moon, and the reason to shoot for the moon was to expand human knowledge, extend man’s exploration, and advance science. He also acknowledged it would be hard and expensive. We have no less ambitious a mission, and probably a more difficult one. It’s also more precious as our children’s lives depend upon it and with them, our future.

The notion of shared sacrifice is something our organization was built upon. The World War II generation understood that each citizen must work and sacrifice together to achieve victory. Our country came together again to win the space race. It’s time we pull together again to finally win the war on cancer, and ensure that children fighting cancer not only survive, but thrive."

Solving Kids' Cancer - Donna Ludwinski
"The advocates at work raising awareness and bringing attention to the need for funding are my heroes. While I am not well versed in the specifics since I focus so much more on the research and priorities, I can say that we should all be careful with our use of the oft-repeated phrase “80% of childhood cancers are now cured.” This message is terribly misleading because it does not include the morbidity and late mortality – only that at 5 years after diagnosis 80% of the children are alive, with nothing noted about their condition, or risk of late relapse or other cancers. This is a sore point for me because my son is included in this happy statistic, yet he died of disease at 24, which I do not consider a cure!"

Alex's Lemonade Stand Foundation - Jay Scott
"Everyone can make a difference. Alex proved that to me. Tell one person today about the problem of childhood cancer, better yet tell 10 people today about childhood cancer. If everyone on PAC2 did this today that would be over 40,000 people learning about childhood cancer today."

People Against Childhood Cancer (PAC2)
"I’ve no idea if you’ve even been on a pediatric cancer floor. Ever walked the halls and seen the smiles or tears on the faces of the little kids as they play on their big wheels. The tiny little masks they wear to ward off infections. How the moms and dads race behind with the ever present IV pole. How the teens hang together and still try to be cool; even though they’re bald and ready to throw up at any time. How the teens have added words like methotrexate and acronyms like ANC to their texting; instead of sweet and LOL. How the babies cry; unable to say what hurts. Or, if you've seen a mom, dad or sibling alone in the break room at 3 am; with their head in their hands, feeling alone, helpless, scared and mad.

I've seen it all and more. In December 2007 AJ had to ask me, "Dad, what's hospice?"

I’ve seen enough.

I want a cure for the elephant in the room: Childhood Cancer."

September is National Childhood Cancer Awareness Month.Day 8 - Coalition Against Childhood Cancer (CAC2)In 2011, 46 orga...
09/08/2020

September is National Childhood Cancer Awareness Month.

Day 8 - Coalition Against Childhood Cancer (CAC2)

In 2011, 46 organizations fighting childhood cancer came together to discuss collaboration, the pediatric cancer landscape and how we could make our voices louder. This grassroots movement brought together representatives of small, medium- sized, and large organizations and committed individuals who fight childhood cancer and provide support to the children and families affected by the disease.

In 2013, the group incorporated as a 501(c)(3) membership organization. CAC2 has grown to over 101 members since its founding, powered by organizations and individuals who care greatly about and invest themselves in making an impact on childhood cancer.

One of the main ways that CAC2 supports the childhood cancer community is by identifying and completing projects that individual organizations can’t complete and manage as easily or as effectively alone. Example projects include:

- Childhood Cancer Fact Library
https://cac2.org/interest-groups/awareness/childhood-cancer-fact-library/

- Childhood Cancer Events Map/Calendar
https://cac2.org/events/

- Gold Awareness Project
https://cac2.org/interest-groups/awareness/gold-awareness-project/

- Hope Portal
https://cac2.org/interest-groups/family-support/hope-portal/

- CureFest
https://www.curefestusa.org/

- “From Bench to Bedside and Beyond” Research Conference
https://cac2.org/wp-content/uploads/2020/07/2016-CSHL-CAC2_Conf_Proccedings.pdf

Some of CAC2 Supporting Members include:
- Assoc. of Pediatric Hematology/Oncology Nurses
- AstraZeneca
- Bristol-Myers Squibb
- GlaxoSmithKline
- KBI Biopharma
- Leukemia & Lymphoma Society
- Loxo Oncology
- National Brain Tumor Society
- Novartis Oncology
- Y-mAbs Therapeutics

In summary, CAC2 puts children and families FIRST in everything it does. It allows organizations to work collaboratively on project they couldn't tackle alone. It amplifies YOUR voice for increased awareness, funding, support, research and advocacy.

September is National Childhood Cancer Awareness MonthDay 7 - Just the FactsFact 1 - Kids with cancer, like all children...
09/07/2020

September is National Childhood Cancer Awareness Month

Day 7 - Just the Facts

Fact 1 - Kids with cancer, like all children (and adults), love to watch elephants dance and play the piano.

https://youtu.be/eAC7etXAH7M

Fact 2 - Arguably, the American Cancer Society (ACS) is the largest and most funding cancer charity. Every year we’ve been asked to Relay for Life, donate, and support its cause. Over 12 years ago we wondered where the money went, and if ACS was an appropriate vehicle if our mission was to cure childhood cancer. Since then, the ACS has, IMHO, “stepped up” a bit. They work with Coalition Against Childhood Cancer and others to support our fight. But.....

......again, IMHO, if you’re looking to donate, here’s where the money donated to ACS goes. (As say, compared to the thousands of orgs strictly devoted to childhood cancer, find some at Coalition Against Childhood Cancer, where it all goes to support the kids).

September is National Childhood Cancer Awareness MonthDay 5 - What's Holding Us Back?What is the biggest hurdle to findi...
09/05/2020

September is National Childhood Cancer Awareness Month

Day 5 - What's Holding Us Back?

What is the biggest hurdle to finding better treatments for our kids? And are we making progress? Well, according to this survey by Alex's Lemonade Stand Foundation
the answers are:

1 - a lack of funding
2 - not really

Join the Coalition Against Childhood Cancer to find great groups to support and increase funding for our kids!

People Against Childhood Cancer (PAC2)
09/05/2020

People Against Childhood Cancer (PAC2)

September is National Childhood Cancer Awareness Month.

Day 4 - Family Support

When your child has cancer, information becomes critical. A great place to look is the #HopePortal - The Wikipedia of Childhood Cancer Support brought to you via Coalition Against Childhood Cancer


https://anddit.com/hope-portal

September is National Childhood Cancer Awareness Month.Day 4 - Family SupportWhen  your child has cancer, information be...
09/04/2020

September is National Childhood Cancer Awareness Month.

Day 4 - Family Support

When your child has cancer, information becomes critical. A great place to look is the #HopePortal - The Wikipedia of Childhood Cancer Support brought to you via Coalition Against Childhood Cancer


https://anddit.com/hope-portal

People Against Childhood Cancer (PAC2)
09/04/2020

People Against Childhood Cancer (PAC2)

September is National Childhood Cancer Awareness Month.

Day 3 - Long-Term Outcomes for Children with Cancer

One thing that always confused us is the fact that we track five (5) year survival rates for children, just like we track 5 year survival rates for adults. Don’t we expect our kids to live longer than 5 years? This tracking system doesn’t consider a two (2) year old who lives 5 years but dies at age 6 from cancer. And, as we know, there are long-term health consequences for 95% of the 5-year survivors.

So, PAC2 took the data and graphed the Long-Term Outcomes for children with cancer. The data:

• On average, about 16% of children die within 5 years of diagnosis.
• Among those children who survive to 5 years from diagnosis, 18% of them will die over the next 25 years.
• More than 95% of childhood cancer survivors will have a significant health related issue by the time they are 45 years of age.
• These health related issues are side-effects of either the cancer or more commonly, the result of its treatment.
• 1/3 will suffer severe and chronic side effects
• 1/3 will suffer moderate to severe health problems
• 1/3 will suffer slight to moderate side effects

Combining the potential outcomes yields the attached graph.

In summary:

• 4% of kids will live at least 30 years with no health problems
• 63% of kids will live at least 30 years but have major to minor health problems
• 33% of kids will be killed by cancer within 30 years

Please help the fight for these kids.

OPINION - first of all, this is not to take away from the docs and researchers doing great work for our kids, it's not to discourage anyone. We think it shows the REALITY of childhood cancer. IMHO childhood cancer is misrepresented when we talk about an 85% "cure" rate. And, we think that misrepresentation diminishes the perceived need for better treatments, which can then lead to truly tragic consequences when it comes to funding more research, which is the only way we'll finally fix this tragedy of childhood cancer.

September is National Childhood Cancer Awareness Month.Day 3 - Long-Term Outcomes for Children with CancerOne thing that...
09/03/2020

September is National Childhood Cancer Awareness Month.

Day 3 - Long-Term Outcomes for Children with Cancer

One thing that always confused us is the fact that we track five (5) year survival rates for children, just like we track 5 year survival rates for adults. Don’t we expect our kids to live longer than 5 years? This tracking system doesn’t consider a two (2) year old who lives 5 years but dies at age 6 from cancer. And, as we know, there are long-term health consequences for 95% of the 5-year survivors.

So, PAC2 took the data and graphed the Long-Term Outcomes for children with cancer. The data:

• On average, about 16% of children die within 5 years of diagnosis.
• Among those children who survive to 5 years from diagnosis, 18% of them will die over the next 25 years.
• More than 95% of childhood cancer survivors will have a significant health related issue by the time they are 45 years of age.
• These health related issues are side-effects of either the cancer or more commonly, the result of its treatment.
• 1/3 will suffer severe and chronic side effects
• 1/3 will suffer moderate to severe health problems
• 1/3 will suffer slight to moderate side effects

Combining the potential outcomes yields the attached graph.

In summary:

• 4% of kids will live at least 30 years with no health problems
• 63% of kids will live at least 30 years but have major to minor health problems
• 33% of kids will be killed by cancer within 30 years

Please help the fight for these kids.

OPINION - first of all, this is not to take away from the docs and researchers doing great work for our kids, it's not to discourage anyone. We think it shows the REALITY of childhood cancer. IMHO childhood cancer is misrepresented when we talk about an 85% "cure" rate. And, we think that misrepresentation diminishes the perceived need for better treatments, which can then lead to truly tragic consequences when it comes to funding more research, which is the only way we'll finally fix this tragedy of childhood cancer.

09/02/2020
Coalition Against Childhood Cancer

September is National Childhood Cancer Awareness Month.

There are hundreds if not thousands of groups fighting childhood cancer. Some focus on raising funds for research, some for family support, some for legislation and advocacy and some for raising awareness......

All are helping. However, there is one unique group you should follow and support. Its mission is to unite, build collaborations and amplify the voice of these many other group - it's the Coalition Against Childhood Cancer (cac2.org).

CAC2 works to ensure the childhood cancer community benefits from greater levels of coordinated action & collaboration to leverage the unique strengths of its members, minimizes waste of precious resources and expertise, & drives better outcomes for patients & their families.

PAC2 is a proud founding member of CAC2.

Imagine a world without childhood cancers!
The primary value underlying CAC2 is to put the children and their families first in everything we do.

Address

Washington D.C., DC
20006

General information

Webpage - http://www.peopleagainstchildhoodcancer.org Contact PAC2 - [email protected] Petition for Increased Funding - http://bit.ly/Petition_To_Raise_Awareness_and_Funding_for-Childhood-Cancer

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Comments

I'm riding in the Great American Cycle Challenge this month to raise money for Childhood Cancer Research...I would greatly appreciate any donation you may be able to offer here. Thank you!
This gives background to H. Res. 69 which needs support for a #HouseVote before December 13
Proud to announce the launch of the book First Survivor. This is a true story of how one family's relentless pursuit of answers saved their son and countless others from a rare form of pediatric cancer and a“zero chance of survival” diagnosis. Help us spread the word of the importance of advocating for pediatric patients and the options of treatment available. 100% of profits go to the Carrot Seed Foundation which funds causes that support Neuroblastoma research and trials. https://tinyurl.com/y7j7qy43
Elizabeth Weidner, 14 and a Stage IV Neuroblastoma Warrior who survives each day with that cancer! Our daughter is working on a project to EDUCATE the public about CHILDHOOD CANCER that she hopes to take with her when she speaks that will HONOR all those who participate! She is currently, the Effingham County Fair Queen Jr. Miss and the Beauty of Hope Benefit Pageant Illinois/Indiana for the American Cancer Society Jr. Miss who has something to say with her platform Crowns Against Cancer! If ANYONE has a cancer t-shirt (any size new, outgrown, or faded will work) that you would to donate to this educational project, please IM for our address. She's especially interested in t-shirts that are specific to the CHILDHOOD CANCER fight since she herself is in that fight trying to educate, motivate, and take action! However, she will accept any shirts though that are caregiver, warrior, or motivational (fundraiser/foundation/meaningful quotes) cancer shirts. Please feel free to share this post with others! THANK YOU in advance. Please delete if it doesn't meet your mission!
Thinking of all of you at Thanksgiving when we either remember children lost and vow to keep their memories alive or are thankful for our survivors.... Peace.
I don't want to end up simply having visited this world - Mary Oliver. Be blessed by one of my blog posts from last year. #dontfeelsorryforme #septemberischildhoodcancerawarenessmonth #bethelightforsomeonetoday
As we all know September is Childhood Cancer Awareness month.. Facebook had pride flags for a while anyone know how we can get (🎗) (🕯) an awareness or hope option in September?? I wrote on Mark Zuckerbergs page.. any ideas of how to make an official request?
PAL 4 A CHILD 🎗🎗🎗 Please Share Please Share Please Share Meet Zendaya...The John Lloyd Bailey V Cancer Won't Bully Me Foundation's first PAL 4 A CHILD. Zendaya has been placed with Jillie, a 16 year old girl with Acute Myeloid Leukemia. Thanks to the breeders, the Jones family in Kirbyville, we were able to fulfil Jillie's wish of getting a Golden Retriever puppy so that she can have her trained as a service dog. As you can see by the photos, she is already enjoying her new puppy. Seeing the smile on Jillie's face helps to give us continued motivation and determination to make a difference within the Childhood Cancer community. We will be forever grateful to the Jones family and everyone that helps make what we do possible. #CancerWontBullyMe #THEJOHNLLOYDBAILEY5THCANCERWONTBULLYMEFOUNDATION #Pal4AChild CAncerwontbullyme.org
The Bert's Big Adventure application is available on ohttps://bertsbigadventure.org/get-involved/apply-family/ur website!! Established in 2002, Bert’s Big Adventure is a 501(c)(3) nonprofit organization that provides a magical, all-expenses-paid, five-day journey to Walt Disney World® for children with chronic and terminal illnesses and their families. Check out the qualifications here:
Dear friends: Last week, Senator Michael Bennet gave a moving colloquy, asking that the Senate support the RACE for Children Act. Please take a moment to send a message on his Facebook wall thanking him. It matters. Thank you.https://www.facebook.com/senbennetco/ If you prefer to call, that works also. Senator Bennet's office: 202-224-5852.
Lets face it we see ribbons and awareness campaigns for each type of cancer. Its not a competition all Cancers Suck and we need a CURE! A portion of proceeds will be donated to Cancer Research Institute to help fund this goal.