August Bulletin: Don't miss this one!
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.
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.
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
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!
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.
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 firstname.lastname@example.org or 202-552-7392.