September 2018 in our Capitol

SeptinWash_edited-1Updated 9/12/18

CureFest will operate as planned. Special Notice: Hurricane Florence WILL NOT have an impact on CureFest. Please read the following statement from CureFestUSA

CureFest will post regular updates on our facebook pageThe surest way to receive updates is to register because that will be our main way of communicating later in the week.  www.CureFestUSA.org


In our nation’s Capitol, September will be full of activities that will highlight the need for FreePocketGuide_edited-4more medical research and opportunities for us to show that we are One Voice Against Childhood Cancer. Together, we are asking our government to make kids’ cancer a national priority.

Below is a schedule of activities that you may find interesting.  As additional information is received, this page will be updated weekly.

Also, available for your use is a Pocket Guide with map marking each activity and location.

Rally for Medical Research Hill Day Training Session and Reception

Wednesday, September 12, 2018,  3:00 pm to 4:30 pm, Training Session, Watergate Hotel, 5:30 pm to 7:30 pm, Reception, also at Watergate Hotel

Screen Shot 2015-07-19 at 2.58.42 PMThe Rally for Medical Research is both a call to action for Congress to make medical research a national priority, and a means by which to raise awareness with the general public about the importance of continued investment in medical research through the National Institutes of Health.  The training session will be held at 3:00 p.m. in the Watergate Hotel. The reception will also be held in the Watergate Hotel starting  at 5:30 p.m.. For more information, contact Mary Lee Watts (marylee.watts@aacr.org) or Jon Retzlaff (jon.retzlaff@aacr.org).  Register to attend here!

Thursday, September 13, 2018,  7:30 am to 5:00 pm

Rally for Medical Research Hill Day Kick Off Breakfast Program and Congressional Meetings on the Hill 

facebook-pictureBreakfast will be served at 7:30 a.m. at the Watergate Hotel followed by a short meeting. Meetings will be scheduled for participants with their individual Senators and Congressional Representatives. It’s a great opportunity to meet the people from your state and district that are representing you in Washington. This is your opportunity to let them know how valuable research is to you, your family, and our economy.  For more information, you may contact by email Mary Lee Watts (marylee.watts@aacr.org) or send email to Jon Retzlaff (jon.retzlaff@aacr.org). Register here to attend.

Thursday, September 13, 2018, 1:00 pm to 5:00 pm

Hearing Loss Workshop

The pediatric patient population with chemotherapy- hearing loss represents a segment of the cancer survivor community with a severe burden of disease with great unmet medical need. An externally-led, FDA-approved Patient Focused Drug Development (PFDD) meeting on September 13, 2018 at the College Park Marriott Hotel & Conference Center in Hyattsville, MD will explore these issues in-depth. More information.  

Thursday, September 13, 2018,  6:00 pm to 8:00 pm

A Golden Toast honoring  members of  The Congressional Childhood Cancer Caucus.

Toast

This is a invitation only event. It will be held in the Madison Hall, James Madison Memorial Building, Library of Congress.

The child friendly event marks the ninth year of the cancer caucus and will  honor Members of Congress and their staffs for the tireless work they have invested over the years.

Dress is business casual with a lot of emphasis on Golden accessories.  For more information, email  goldentoast2018@gmail.com 

Friday , September 14, 2018   9:00 am to 11:00 am

Childhood Cancer Caucus Summit

9th Childhood Cancer SummitThe 2018 Congressional Childhood Cancer Caucus is a bipartisan caucus serving as a public policy clearinghouse for information on pediatric cancer and to be a forum for Members of Congress to work together to address this critical issue. The Caucus of over 100 congressional members strives to raise awareness about pediatric cancer, advocate in support of measures to prevent the pain, suffering and long-term effects of childhood cancers, and work toward the goal of eliminating cancer as a threat to all children. The event will be at the Capitol Visitor’s Center (CVC), Room 201 A/B. IMPORTANT: While the event is open to the public, the House Appointment Desk requests an RSVP list. You must complete a RSVP at this link here: https://goo.gl/forms/H2x3l8i1Y1Pyjk2

Agenda: The Summit’s Keynote speaker will be Dr. Ned Sharpless, Director of the National Cancer Institute. He will discuss implementation of the STAR Act, and other pediatric cancer efforts at the NCI.   Dr. Lisa Richardson and Vicki Benard from the Center of Disease Control (CDC) will speak on the STAR Act as well. The CDC plays in an important part in implementing the STAR Act; they are excited to talk about those efforts at the Summit.   Rep. Diana DeGette (D-CO) will also deliver remarks regarding recent efforts from the Caucus regarding pediatric palliative care. For more information, contact (Thomas.Rice@mail.house.gov)

Friday, September 14, 2018   11:30 am to 1:00 pm

The Alliance for Childhood Cancer Luncheon and Childhood Cancer Art Show

Please join The Alliance for Childhood Cancer and members of the childhood cancer community for a special luncheon and art exhibit featuring the work of children with cancer, adult survivors and their siblings, immediately following the 9th Annual Congressional Childhood Cancer Caucus Summit.  Here are the details on how to enter: Click Here

Friday, September 14, 2018,  12:00 pm to 5:00 pm

Youth Lobby Day

On Friday, immediately after the House of Representatives Childhood Cancer Summit, CureFest will sponsor a pediatric cancer Youth Lobbyy Day. Kids will attend an Screen Shot 2018-08-07 at 3.52.50 PMadvocacy training session. Please meet in the Rayburn House Office Building basement cafeteria on Friday at noon.  45 Independence Ave SW.  Washington, D.C.  Parents will be welcome to stay in the cafeteria. Kids will then meet with Members of Congress and Congressional staff to express their support for pediatric cancer research. This is a kids-only advocacy day for youth in elementary school to college. Parents will be welcome to stay in the cafeteria.  This is a powerful way to ask Congress to care about kids with cancer. Be part of the solution! (No experience is necessary). Contact Jenn Flynn (jenn@kidsvcancer.org) for additional information.

REGISTRATION: Registration ends September 12, 2018 at 11:59pm EDT

Saturday, September 15, 2018  2:00 pm to 3:45 pm 

Rally to the US Capitol March

Screen Shot 2015-08-22 at 5.16.36 AMThis event is being organized by Rally Foundation for Childhood Cancer Research. 

Here is a preliminary schedule:
Families will be meeting on Freedom Plaza to make signs and then march to the U.S. Capitol and back. Freedom Plaza is located at the corner of 14th Street and Pennsylvania Avenue NW. The majority of rally participants will be attending the Welcome, Meet & Greed Event which begins at 5 p.m. at Freedom Plaza  where this Rally walk begins. Please RSVP with names of those attending to info@curefestdc.org. Rally is required to have a firm headcount for the rally.  This is very important.

Saturday, September 15, 2018   5:00 pm to 7:00 pm

CureFest Meet and Greet

A welcoming event the night before CureFest will be held at the Freedom Plaza, Washington, DC 20004. This family friendly event includes Packet Pick Up for the CureFest Walk, and some activities for children.

Saturday, September 15, 2018  7:00 pm to 10:00 pm

A Night of Golden Lights

Immediately following the Meet & Greet is a “A Night of Golden Lights.” also to be held at Freedom Plaza from 7:00 – 8:30 p.m. There will be live music and a speaking presentation. At 8:30 p.m. all attendees will walk to the White House for a candlelight vigil.

Night of Golden Lights is a CureFest candlelight rally to honor the children taken by cancer and all those still in the fight. Children, their families and advocates will walk from Freedom Plaza as a group and gather in front of the White House holding gold lights. The mission of the rally is to generate public awareness for childhood cancer. This event is open to the public and  is free to all participants.

Sunday, September 16, 2018  10 am to 3:30 pm

CureFest Events

CureFest is an annual festival in Washington, DC that is the key component of the growing childhood cancer movement. CureFest is held in the Nation’s Capital each September in an effort to make childhood cancer a national priority. It is an opportunity for the childhood cancer community, the general public and elected leaders to come together as One Voice against childhood cancer. The ultimate goal is safer treatments and better outcomes for children diagnosed with cancer.

39891688_2232412626786434_8982945230823096320_oOver 100 childhood cancer foundations and groups are expected to attend CureFest. Over 2,000 individuals have indicated they will be attending. It is a family-friendly event with activities for all ages. The event will include live music, entertainment, and various presentations by children and adults impacted by childhood cancer. Featured will be moving tributes for children who have or have had cancer. CureFest, again this year, will be held on  the Mall close to the U.S. Capitol. It is a very prominent location and is very close to public transportation, food vendors and public restrooms. Go to the CureFest Facebook   event page and sign up so you can be updated on all the information as it happens.

The Opening Celebration begins at 10:00 a.m. It is followed by a speaking program from 10:30 a.m. to 12 p.m.

Registration is now open for CureFest for Childhood Cancer 2018! Be a part of the growing childhood cancer movement and attend this important event in Washington, DC on September 15th and 16th.  Join the CureFest Walk. Go to www.curefestdc.org to register for all events.

For the fifth time, CureFest will include a walk beginning at 12:00 Noon on the National Mall. Participants will enjoy the walk, which is approximately 1.8 miles. It takes place on the National Mall and offers spectacular views of the city from the U.S. Capitol, and the Washington Monument. Water and light snacks will be provided at the finish line. Registration is free, but you must register to walk

The CureFest Walk is intended to increase the participation by the general public. Successful charity walks in the Washington-area typically start small but eventually attract several thousand participants within a few years of being established.

For more information about CureFest visit the CureFest web page.

This page will be updated every week, please check back for changes and additions.

Author:  Joe Baber

This entry was posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

One Response to September 2018 in our Capitol

  1. Pingback: Hope | Four-Square Clobbers Cancer

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