July Bulletin: Recess, FDA News & September Preview

House Stands at Recess through Labor Day

The House of Representatives is now in recess through the end of August, an ideal time for childhood cancer advocates to find their Members of Congress while they're back in their home districts.

Typically, Members of Congress from both chambers spend nearly all of August back in their home districts but the Senate will only recess for a few days this year before returning to work in Washington. If you're willing to try to meet with your Representative this August, we've compiled some tips on our blog for setting up a meeting and suggestions for topics to cover. 

If you're not able to get a meeting set up with either your Representative or a member of their staff, another idea is to check out Town Hall Project to see if they'll be holding a public forum near you. Here are some tips for participating in a town hall meeting.

Thank you for taking the time to share your story and our shared cause with lawmakers who have the power to create meaningful change for our kids.

FDA Announces Drug Shortages Task Force and Draft Guidance on Gene Therapy for Rare Diseases


Drug Shortages Task Force: FDA Commissioner Scott Gottlieb, MD, announced the formation of a new task force charged with "[delving] more deeply into the reasons why some shortages remain a persistent challenge ... [and] to look for holistic solutions to addressing the underlying causes for these shortages." The Drug Shortages Task Force will be led by Keagan Lenihan, the FDA's associate commissioner for strategic initiatives.

We are encouraged by this development, as drug shortages have frequently popped up over the years as a threat to reliable, dependable cancer treatment for our kids. We're grateful to the FDA for taking steps to find lasting solutions to this recurring problem. 

> Read more: FDA's Press Release, 7.12.18

Draft Guidance on Human Gene Therapy for Rare Diseases:Commissioner Gottlieb also announced this month that the FDA is issuing six draft guidance documents "intended to serve as the building blocks of a modern, comprehensive framework for how we'll help advance the field of gene therapy while making sure new products meet the FDA's gold standard for safety and effectiveness."

One of these new draft guidelines is focused on Human Gene Therapy for Rare Diseases - a category that includes pediatric cancers. You can find the full draft guidance here, which is open for public comment and stakeholder input before it will be finalized.

> Read more: FDA's Press Release, 7.11.18

A Look Ahead: Childhood Cancer Awareness Month

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  • September 13: Along with several partnering organizations, we're holding an externally-led Patient Focused Drug Development meeting to provide the FDA with patient perspectives on chemotherapy-induced hearing loss in pediatrics. Visit here to learn more and register. Registration is limited and filling fast!
  • September 14-16: We'll bring live updates from a number of childhood cancer awareness events taking place in DC throughout September, including CureFest on the National Mall - which we're proud to help sponsor - and the Congressional Childhood Cancer Caucus's annual Summit on Capitol Hill.
  • September 26: Save the Date for the continuation of our 2018 Webinar Series with "Hope on the Horizon – New Treatments for Childhood Cancer." Registration will be available soon.

Plus: As our 2018 College Scholars Award recipients start their fall semesters, they also kick off their chosen childhood cancer advocacy projects. Learn about our scholars and their projects here

Tip: Check the CAC2 Event Calendar to find or share events going on in September (or any other time of year!): https://cac2.org/events/

Quick Links | Recommended Reading

  • Understanding the Psychosocial Effects of Childhood Cancer:Scientific American shined a spotlight on the mental and emotional toll that a childhood cancer diagnosis takes on the whole family. (Scientific American7.24.18)
  • Speeding toward Faster T-Cell Production: Researchers are working to more efficiently edit genes by using electrical fields instead of viruses to deliver modified genetic material into a patient's cells. This is early research that has not yet been tested in people but it holds tremendous promise for speeding the pace of immunotherapy advances. (New York Times OR Nature Journal, 7.11.18)
  • CDC Map Shows Incidence Trends: A new map of childhood cancer incidence rates reveals higher rates in the Northeast and lower rates in the South. There are likely multiple factors accounting for the geographic disparities, including genetic predisposition, race and ethnicity, environmental exposure (air pollution, secondhand smoke, etc), and enhanced detection in certain geographic regions due to better access to care. (Centers for Disease Control, 6.29.18)
  • Pediatric Cancer Survivors Need Lifelong Endocrine Screening: The Endocrine Society released new clinical guidelines directing providers to regularly assess childhood cancer survivors for a wide range of growth and hormone disorders, based on new research finding that as many as 50 percent of survivors diagnosed as teens will develop an endocrine disorder later in life. (The Journal of Clinical Endocrinology & Metabolism, 6.29.18)

Another Beautiful Art Day : Thank You!

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Thank you to everyone who supported this year's Art Day in Sagaponack and Georgica, New York, earlier this month. We give special thanks to Susan and Marilyn Scherr, who have generously hosted this gorgeous event year after year in support of our childhood cancer advocacy work.

Gifts of Stock


Did you know that giving appreciated stock held for more than a year could be more beneficial than giving cash?

If you donate stock that has increased in value since it was first purchased over a year ago—and if you itemize deductions—you can take a charitable deduction for the stock's fair market value on the day it is given to Children’s Cause. Learn more about the benefits and process at www.childrenscause.org/stock.

Jessica Keanbulletin
June 2018: A busy month of policy progress

Authorization to Appropriation: Next Steps for STAR Act

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Earlier this month, President Donald Trump signed the Childhood Cancer STAR Act into law, authorizing $30 million annually from 2019-2023 for programs and research to combat childhood cancer through the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). 

Passage of the bipartisan STAR Act - the most comprehensive childhood cancer legislation ever introduced - was the result of many years of hard work from our Congressional champions, our community at large, grassroots advocates from all over the country, and this organization. Its provisions are grounded in solid data, smart analysis, and a robust roundtable process that achieved community consensus on top policy priorities. 

Now, we work to get the STAR Act fully funded -- and all indications suggest this process is off to a good start! On Thursday, the Senate Appropriations Committee approved a fiscal year 2019 spending bill that includes funding for implementation of STAR, including survivorship research, biospecimen research, pediatric and adolescent surveillance, and additional funding for state cancer registries that track cancer in children, teens and young adults.

We thank Senate appropriations leaders for moving this bill quickly through Committee and invite you to join us in asking other Members of Congress to support full funding of the TAR Act: Take Action.

Appropriations Committee Calls for GAO Review of Barriers to Care for Childhood Cancer Survivors

The House Committee on Appropriations included a formal request that the General Accounting Office (GAO) study the "existing barriers to obtaining and paying for adequate medical care for survivors of childhood cancer" and submit recommendations to Congress based on their findings. 

The Children's Cause has been working to achieve this milestone for the past several months, after similar language was removed from the Childhood Cancer STAR Act. We express gratitude to the Appropriations Committee for recognizing that this is an important first step toward improving the long-term care of childhood cancer survivors, a cohort expected to reach 500,000 by 2020. 

Specifically, the GAO will be tasked with identifying barriers to coordinated survivorship care and making recommendations to "provide improved access and payment plans for childhood cancer survivorship programs and palliative care, including psychosocial services."

Hope Portal Resource Database Launches Nationally

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CCCA Communications Director Jess Kean (left) was recognized at the Coalition Against Childhood Cancer Summit in Seattle this month for her contributions as a member of the Hope Portal Launch Team.

Earlier this month, we shared a new way for families to find the resources offered by Children's Cause for Cancer Advocacy – and hundreds of other childhood cancer nonprofits! We join the Coalition Against Childhood Cancer in inviting you to visit the Hope Portal, a first-of-its-kind community directory of curated childhood cancer family support organizations.

At hope-portal.org, you can navigate a wealth of resources according to your family’s specific needs, diagnosis and geographic location. Whether you're looking for help paying the bills, a care package or wish granting, a nearby camp, or just someone to talk to, the Hope Portal brings vetted information to families in an easy-to-navigate format, and we’re thrilled to be part of its national launch.

June Advocacy Webinar Highlights Local, State Progress

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If you were unable to join us on Wednesday for our webinar on local and state-level advocacy around childhood cancer policy issues, the recording is now available on our website

We thank these terrific advocates for sharing their time and expertise with us: 
- Lynn Schaeber, author of Peyton's Law
- Christopher Winters, Founder of National Children's Cancer Consortium
- Joyce Reinecke, JD, Executive Director of Alliance for Fertility Preservation

In discussing advocacy tactics that have worked in communities around the country, several common themes emerged around the importance of: sharing patient stories; working within coalitions; tapping into local experts; and building relationships with a wide range of stakeholders. "You've just got to keep going until you find someone that listens," said parent advocate Lynn Schaeber.

Save the date for our next webinar on the topic of new pediatric oncology therapies, scheduled for September 26th. We will let you know when registration is open!

PFDD Workshop on Chemo-Induced Hearing Loss

Registration is now open for the September 13th Patient-Focused Drug Development workshop on chemotherapy-induced hearing loss in pediatrics. If you or someone you know is interested in childhood cancer hearing loss, we hope you'll join us this fall in Hyattsville, MD, just outside of DC.

The half-day meeting follows the FDA model for PFDD meetings and will feature a series of facilitated panel and audience discussions, focused on providing the FDA and other stakeholders with patient views on key issues related to burden of the condition, potential treatments, risk-benefit analysis and clinical trials.

Visit www.childhoodcancerpfdd.org to register today. We'll keep you posted as details are finalized, including hotel block information, speakers and the full agenda.

In other policy news...

  • Senate Rejects Rescissions Package: By a 48-50 vote, the Senate rejected the White House's plan to claw back $15 billion in previously-approved funds, including $7 billion for the Children's Health Insurance Program. (The Washington Post,6.20.18)
  • NIH Poised to Receive Funding Increase: House and Senate appropriations committees have approved FY2019 spending bills that would provide $38.3 billion in NIH funding increases of between $1.25 billion (House bill) to $2 billion (Senate bill) over FY2018's budget. (Science, 6.26.18)
  • Pre-Existing Condition Protections at Risk: The Children's Cause is proud to join with 45 cancer advocacy & professional organizations in a campaign to oppose efforts to get rid of pre-existing condition protections. We ask The Justice Department to stand up for millions of Americans with pre-existing conditions, including childhood cancer survivors:
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Thank you ... 

... to everyone who attended or supported our Jazz in June event last week! We had a terrific night with good friends enjoying great music, and we thank everyone who helped to make it a success. We give special thanks to everyone who donated or purchased a silent auction item and to the Eric Boyd Trio for sharing their talent with us.

Finally, please join us in thanking the evening's generous sponsors, including:

  • Presenting Sponsors: Genentech, Rusty and Lori Ring, and Novartis
  • Gold Sponsors: Amgen, Association for Accessible Medicine, Susan L. Weiner, Agios Pharmaceuticals, Jazz Pharmaceuticals

To see photos from the event, visit our blog or Facebook page.

Jessica Kean
May 2018: STAR Act Passes Congress; College Scholars Announced

Congress Passes the Childhood Cancer STAR Act

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Last week, the House of Representatives passed the most comprehensive childhood cancer legislation ever introduced. The Childhood Cancer STAR Act is expected to be signed into law by President Trump this week.

We thank our champions on Capitol Hill for leading the way toward this huge milestone for our community, especially the original sponsors of theChildhood Cancer STAR Act: Senators Jack Reed (RI), Shelley Moore Capito (WV), Chris Van Hollen (MD) and Johnny Isakson (GA) and Representatives Michael McCaul (TX), Jackie Speier (CA), Mike Kelly (PA) and G.K. Butterfield (NC).

We also thank each and every one of you who've reached out to your Members of Congress over the past few months -- and years! Every email, tweet, phone call and meeting from the tireless advocates in our community played a part in this monumental victory for our kids. This has been a true collaborative effort with many organizations working together to get us here. We give special recognition to the coalitions of the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer for their leadership.

The bipartisan STAR Act is designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors. This legislation is the result of many years of hard work from our Congressional champions, our community at large, and this organization. Its proposals are grounded in solid data, smart analysis, and a robust roundtable process that achieved community consensus on top policy priorities.

What's next? At the Children's Cause, we have already turned our attention to funding, and work is underway to ensure the STAR Act receives the appropriations it needs for implementation. In the coming days and weeks, we'll be asking you to join in that effort. Please continue to follow us onFacebookTwitter and Instagram for updates and action steps.

Survivor Scholarship Recipients Announced


We are excited to introduce the inaugural class of our College Scholars Program! We congratulate Malachi Thompson and Melissa Peace on their selection as our 2018 College Scholars, among a competitive field of applicants.

About the College Scholars Program: Children’s Cause offers an annual opportunity for two childhood cancer survivors to gain valuable cancer advocacy experience. College Scholars, who receive a $2,000 academic scholarship, agree to complete a project of their choosing related to childhood cancer advocacy.

About Malachi: At age 6, Malachi Thompson was diagnosed with Acute Myeloid Leukemia (AML). Just months after finishing a year and a half of intensive therapy, he relapsed and was successfully treated with an umbilical cord blood transplant from an unrelated donor. Today, Malachi is a high school graduate with plans to study Aerospace Engineering at the University of Alabama in Huntsville. Malachi has been cancer-free for the past ten years because a transplant saved his life. Now, he wants to give back and encourage others to become bone marrow donors. For his College Scholars project, Malachi will organize a bone marrow drive in his local community in Alabama.

About Melissa: Melissa Peace was diagnosed with Non-Hodgkin's Lymphoma her freshman year at Colgate University. Today, Melissa is a medical student at George Washington University's School of Medicine with plans to become a pediatric oncologist. "I want to participate in the College Scholars Program so that I can be an advocate for children with cancer and work to better the field of pediatric oncology research from a legislative perspective," Melissa wrote in her application. As a CCCA College Scholar, Melissa will work to build an advocacy interest group at her medical school, creating a new cohort of informed, engaged voices speaking up to lawmakers about research and healthcare issues that impact children with cancer and survivors.

Find out more about Malachi and Melissa and the projects they'll be taking on this summer and fall : Meet Our 2018 College Scholars.

Registration Now Open for June Advocacy Webinar


Register now for our June 27th webinar "Advocacy Tools and Tactics: How to be the Voice of Change," designed for childhood cancer advocates who want to learn more about effective advocacy practices. We'll hear from several advocates around the country who've been achieving progress around childhood cancer policy issues. This webinar, part of our 2018 Webinar Series, aims to arm you with creative new ideas and impactful tools to take to your own local legislators or statehouse in pursuit of a brighter future for children with cancer.

This webinar is being exclusively offered to members of our Kids Action Network, an active and engaged cohort of childhood cancer advocates. Byregistering to participate, you'll automatically become a KAN member. You can opt out of KAN at any time by notifying us at info@childrenscause.org.

PFDD Workshop on Chemo-Induced Hearing Loss

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Registration is now open for the September 13th Patient-Focused Drug Development workshop on chemotherapy-induced hearing loss in pediatrics. If you or someone you know is interested in childhood cancer hearing loss, we hope you'll join us this fall in Hyattsville, MD, just outside of DC.

The half-day meeting follows the FDA model for PFDD meetings and will feature a series of facilitated panel and audience discussions, focused on providing the FDA and other stakeholders with patient views on key issues related to burden of the condition, potential treatments, risk-benefit analysis and clinical trials.

Visit www.childhoodcancerpfdd.org to register today. We'll keep you posted as details are finalized, including hotel block information, speakers and the full agenda.

Quick Links | Recommended Reading

  • "All of Us" Enrollment Expands: The National Institutes of Health opened national enrollment of the All of Us Research Program this month, holding launch events in diverse communities around the country. (NIH, 5.1.18)
  • Advances in Medulloblastoma Screening: Researchers have identifed six gene variations that predispose carriers to developing medulloblastoma, paving the way for new genetic counseling and screening guidelines. (The Lancet, 5.9.18)
  • Childhood Leukemia & Germs: A controversial new study suggests that a lack of exposure to germs in infancy may contribute to the development of childhood acute lymphoblastic leukemia. Experts are emphasizing that this is early research, genetics are also a factor, and there is currently no magic formula to preventing ALL. (Nature Reviews Cancer, 5/21/18)
  • Good News and Bad News in Childhood Cancer Trends: In its annual report to the nation on cancer statistics, the National Cancer Institute reveals that cancer diagnoses are increasing among American children at a rate of 0.8% annually but survivorship rates are continuing to improve. Between 2010-2014, childhood cancer mortality decreased about 1.5% each year. (NCI, 5.22.18)

Join us for Jazz in June! Tickets are now on sale.


Join us in Washington, DC on June 18th for a reception featuring jazz music from the Eric Byrd Trio! Our Jazz in June event will bring together new and seasoned childhood cancer advocates from 6:30 - 9:00pm at the Hamilton Loft near Metro Center. Tickets are now available, including complimentary admission for childhood cancer survivors.

Jessica Kean