September Bulletin: Awareness, Advocacy, Action

Chemo-Induced Hearing Loss Meeting Spotlights Critical Quality of Life Issue

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We were proud to co-host an Externally-Led Patient Focused Drug Development (EL-PFDD) workshop on chemotherapy-induced hearing loss in pediatrics, in partnership with Momcology, Mattie Miracle Cancer Foundation, and the Children’s Brain Tumor Foundation. This half-day meeting featured a series of facilitated panel and audience discussions focused on providing the FDA with patient perspectives on a survivorship issue with a significant unmet need and quality-of-life burden. 

This EL-PFDD was an incredibly empowering day for childhood cancer survivors and family members, giving them a long-deserved spotlight to share their very personal stories about the severe impact that hearing loss has had on their lives and their families. Approximately 200 stakeholders participated, either in person or via webcast, and we heard over and over again about the impactful and emotional power of this event.

You can find the full webcast recording here and photos from the workshop here. In the coming weeks and months, we’ll share more outcomes from this meeting, including a formal report.


Appropriations Bill Includes Childhood Cancer Priorities, including GAO Report Championed by CCCA

At the conclusion of the Childhood Cancer Summit earlier this month (more on that below), Representative Michael McCaul shared breaking news that the House and Senate had reached a conference agreement to fully fund the STAR Act in FY2019, a huge win for the community and a testament to the strength of our combined advocacy efforts.

He was referring to a "minibus" appropriations bill, passed by both chambers, that provides funding for the Labor, Education and Health and Human Services departments as well as several other agencies. The bill awaits signature by the President. 

The measure contains several priorities of the Children's Cause for Cancer Advocacy:

  • Funding for the National Institutes of Health at $39 billion -- an increase of $2 billion, which will include cancer research;

  • Full funding for the STAR Act, which was passed with unanimous bipartisan support this summer; and

  • A directive to conduct a GAO report, originally contained in the STAR Act but deleted in the final hours of STAR consideration. The GAO report would evaluate the barriers to obtaining medical care for survivors of childhood cancer and provide recommendations to improve access for these individuals, with a focus on palliative and psychosocial care.

The Children's Cause worked tirelessly on the above items with a particular focus on the GAO report, and we thank Congress for including it in this spending bill.


NIH Director Keynotes Childhood Cancer Summit

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The Congressional Childhood Cancer Caucus's 9th Annual Summit on Capitol Hill brought the community together for an opportunity to hear from Representatives Michael McCaul and Mike Kelly, as well as Dr. Ned Sharpless, Director of the National Cancer Institute.

Dr. Sharpless shared updates on the Cancer Moonshot, immunotherapy breakthroughs, and developments in big data. He emphasized the huge achievement of a $2 billion boost in NIH funding in FY2019, calling it a "testament to the broad bipartisan support for cancer research but it's also a real testament to [the advocacy community.]"

Director Sharpless also put a strong emphasis on the importance of basic science, which is defined by the NIH as 'research that supports a broad understanding of human behavior and biology.' Dr. Sharpless remarked that NIH has to "double down and continue to invest in basic science. That’s where the really good ideas come from. They start in the lab.”

On the STAR Act, Dr. Sharpless thanked childhood cancer advocates for this "magnificent achievement," calling it "a real tool tor the National Cancer Institute. It gives us a set of goals and powers that make our ability to treat and study and work on and actually influence the outcome of childhood cancer much greater." On implementation, he said there will now be new pediatric oncology voices represented on relevant boards and there will be a new emphasis on biorepositories and banking samples.


CureFest and More

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We joined with families and organizations from around the country for CureFest, an annual event that Children's Cause is proud to help support as a bronze sponsor. If you missed CureFest, there was fantastic live coverage of the many events broadcast on their Facebook page. We encourage you to check out the photos and videos -- and make plans to join next year. Organizers have already announced that the dates will be September 20-22, 2019.

In other notable news, we congratulate our colleagues who receivedRareVoice Awards at the 7th annual celebrate on September 12th. We also thank and recognize Hyundai Hope on Wheels for their 20th year of supporting childhood cancer.

See more news and photos from this September on our blog.


Quick Links | Recommended Reading

Our founder Susan L. Weiner participated in a United Nations General Assembly meeting this week on tackling childhood cancer survival disparities in low- and middle-income countries: 


Final Opportunity to Win $100 with Our 2018 Family Needs Survey!

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.

Your participation is completely voluntary, and your individual responses will be kept confidential. As a thank you for your time, you'll automatically be entered into a weekly $100 Amazon gift card drawing!
BEGIN SURVEY

Jessica Kean
August Bulletin: Don't miss this one!
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It's Almost Here: Childhood Cancer Awareness Month!

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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!

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Registration is now open for our September 26th webinar, Hope on the Horizon -- New Treatments for Childhood CancerThis 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.


Webcast Registration Open for Childhood Cancer Hearing Loss in Pediatrics Workshop

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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.


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

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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


Designs that Donate : Charity of the Month

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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!


STAR Act Update: Senate Approves Appropriations

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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.


September 14: Shop & Socialize in Georgetown

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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.

Jessica Kean
July Bulletin: Recess, FDA News & September Preview
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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

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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

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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