It's Almost Here: Childhood Cancer Awareness Month!

September is designated as Childhood Cancer Awareness Month, a time when we celebrate advances in childhood cancer treatment and care, remember the children we've lost, and engage new advocates to join in our mission of achieving a day when every child with cancer can live a long and healthy life.

In DC, a cluster of awareness events takes place between Thursday, September 13th and Sunday, September 16th. The Four Square Clobbers Cancer blog has a terrific listing of many of these events. A highlight every year is CureFest on the National Mall, which we're proud to help sponsor.

Another highlight is the annual Congressional Childhood Cancer Caucus Summit on Capitol Hill, which is followed by the Alliance for Childhood Cancer's Art Exhibit. The Alliance is inviting children and teens with cancer, siblings and survivors to submit original artwork for display at this year's event. Submission deadline is September 7th. Find more details and submission guidelines, here.

To find events and gold lighting illuminations happening closer to home, we highly encourage you to check out the Coalition Against Childhood Cancer (CAC2) Events Calendar, here.

Be sure you're following us on Facebook and Twitter for live updates from Washington all month long. Use hashtags #CCAM and #GOLDSTRONG to share your own awareness stories!

Registration is now open for our September 26th webinar, Hope on the Horizon -- New Treatments for Childhood Cancer. This webinar will disseminate the most recent childhood cancer treatment discoveries and drug/protocol approvals. Speakers will include some of the leading researchers in the nation. Register here.

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Webcast Registration Open for Childhood Cancer Hearing Loss in Pediatrics Workshop

We've expanded participation in the September 13th externally-led Patient-Focused Drug Development workshop on chemo-induced hearing loss in pediatrics to a virtual audience. Now, you can register to join the live webcastof this meeting.

In partnership with Momcology, Mattie Miracle Cancer Foundation and the Children's Brain Tumor Foundation, the Children's Cause is proud to be co-hosting this meeting, aimed at providing the FDA and other stakeholders with a deeper understanding - from the perspective of childhood cancer families - of the burden of chemo-induced hearing loss and exploring the unmet needs facing this population.

Webcast participants will be actively engaged in the meeting through poll questions and discussion points throughout the half-day event (1-5pm EST). Pre-registration is required and will remain open for virtual participation until the day before the event. REGISTER HERE.

You can learn more about this externally-led PFDD workshop at the meeting website: www.childhoodcancerpfdd.org.

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Help Improve Healthcare with our 2018 Survey on Access and Affordability Issues

Understanding the challenges of childhood cancer families, patients and survivors is critical to improving treatments and care. At Children's Cause for Cancer Advocacy, responding to real-life issues on affordability, insurance coverage and access to care is a top priority. 

That's where you come in: In partnership with the Patient Advocate Foundation, we're conducting a 5-10 minute online survey of childhood cancer families, patients and survivors to better understand healthcare barriers facing families like yours. Your input strengthens the data we take to policymakers in Washington and state capitols as we fight for improved access to quality, affordable care. 

As a thank you for your time, you'll automatically be entered into a weekly $100 Amazon gift card drawing! BEGIN SURVEY

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Designs that Donate : Charity of the Month

Children’s Cause for Cancer Advocacy is thrilled to be honored by Designs That Donate as their Charity of the Month for September in recognition of Childhood Cancer Awareness Month. During September, we will receive DOUBLE the donation when you select us as your charity of choice.

Visit their website (https://designsthatdonate.com/) for more details and to browse the many beautiful products available. Thank you for supporting our mission!

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STAR Act Update: Senate Approves Appropriations

Last week, the Senate included funding for the Childhood Cancer STAR Act in their FY2019 Labor-Health-Human Services bill -- along with a $2 billion boost to the National Institutes of Health. 

The STAR Act was signed into law in early June, 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). But in order to fully enact the provisions within the STAR Act, it requires full funding -- which has been a top priority of the Alliance for Childhood Cancer, Children's Cause and our other advocacy partners in the community this summer.

We thank the Senate for acting quickly to secure STAR funding in their fiscal year 2019 appropriations -- and now we call on the House to follow suit.

The House returns from a month-long recess immediately after Labor Day, when they are expected to resume appropriations work. We hope to see STAR Act funding included in the final bill taken up by the full House. 

House and Senate versions of the appropriations bills must then be "conferenced" to reach consensus on a final bill that goes to the president. Our goal is to ensure that the House agrees to the Senate funding for the STAR Act. You can help make that happen by reaching out to your Representative about the importance of fully funding STAR. We have anaction alert here that it makes it quick and easy!

Also: If you have (or already had!) the opportunity to meet with your Member of Congress while they are home on recess, we'd love to hear about your meeting or conversation. This information will remain confidential and serves to help us improve our advocacy and refine our own work with these offices.

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September 14: Shop & Socialize in Georgetown

DC, Maryland, Virginia friends: Please join us at ALEX AND ANI’s Georgetown storeat 3068 M St in DC as they will be hosting a “Charity by Design” event to benefit Children’s Cause for Cancer Advocacy on Friday, September 14th from 6-8 PM. It will be a night of socializing and shopping to support Children’s Cause! ALEX AND ANI will donate 15% of gross sales from the event to our organization.

To RSVP, contact Charlcie by Sept. 7th at csteuble@childrenscause.org or 202-552-7392.

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.

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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

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A Look Ahead: Childhood Cancer Awareness Month

• 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/

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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 American, 7.24.18)
• 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)

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Another Beautiful Art Day : Thank You!

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.

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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.

Authorization to Appropriation: Next Steps for STAR Act

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.

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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."

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Hope Portal Resource Database Launches Nationally

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.

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June Advocacy Webinar Highlights Local, State Progress

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!

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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.

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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.