September 2014 in our nation’s capitol will be full of activities that will highlight the need for more medical research and an opportunity to show our government that we need to make childhood 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.
Wednesday, September 10, 2014, 8 a.m. to 4 p.m.
Under the Microscope: Pediatric Drug Development: There will be a one day meeting to explore challenges related to pediatric product development. The meeting will serve as a forum for FDA’s stakeholders (patients, caregivers, patient advocates, healthcare professional groups, the general public, academia, and industry). You can attend in person or follow the the meeting on the web. When you register, you will be given an opportunity to choose to attend in person or by web. This is an excellent opportunity to discuss compassionate use waivers, and what the barriers are today in some clinical trails for children. The meeting will be held at the Washington Marriott at Metro Center. for mor information go to: http://patientnetwork.fda.gov/3rd-annual-patient-network
Tuesday, September 16, 2014, 7 p.m. to 9 p.m.
The American Cancer Society Cancer Action Network (ACS CAN) will be honoring those who have been touched by cancer and remembering those lost, with a Lights of Hope ceremony during the 2014 Leadership Summit and Lobby Day in Washington D.C.
Lights of Hope bearing the names of those touched by cancer will line the Capitol Reflecting Pool the evening of September 16, 2014 in an experience to fight back against cancer at the Nation’s Capitol. For additional information, please contact David Pugach at firstname.lastname@example.org .
Wednesday, September 17, 2014, 3 p.m. to 7:30 p.m.
Rally for Medical Research Hill Day Training Session and Reception
The Rally for Medical Research (www.rallyformedicalresearch.org) 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. For more information, contact Mary Lee Watts (email@example.com) or Jon Retzlaff (firstname.lastname@example.org). Register to attend here!
Thursday, September 18, 2014, 8 a.m. to 4:30 p.m.
Rally for Medical Research Hill Day Breakfast Program and Congressional Meetings.
Meetings will be held 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, contact Mary Lee Watts (email@example.com) or Jon Retzlaff (firstname.lastname@example.org). Register here to attend.
Thursday, September 18, 2014, 4:30 p.m. to 6:30 p.m.
A Golden Toast Honoring Congressman Michael McCaul and Congressman Chris Van Hollen, Co Chairs of The Congressional Childhood Cancer Caucus.
This is a invitation only event to be held at Bar 201 in Washington, DC.
The event marks the fifth year of the cancer caucus and will honor the Congressmen and their staffs for the tireless work they have invested over the years.
For more information, contact Annette Leslie (email@example.com)
A special showing of the film, “Henry and Me,” will be held at this location immediately after the reception (6:30 pm). Henry and Me is an animated film about a little boy with cancer (Henry) who goes on a magical journey with the New York Yankees.
Thursday, September 18, 2014, 6:30 p.m. to 9:30 p.m.
2014 Hyundai Hope on Wheels Gala
This is a invitation only event. Hyundai Motor Company will be celebrating sixteen years involvement and over $87,000,000 in grants and contributions to childhood cancer research they have made during that time. For this wonderful event, Hyundai will bring together some of their top participating dealers, researchers, oncologists, representatives of major medical institutions and the object of everyone’s attention, the children and their families that have been affected by cancer.
Friday, September 19, 2014 9 a.m. to 10:30 a.m.
Childhood Cancer Caucus Summit
Keynote Address: Dr. Francis Collins, Director of the National Institute of Health
The Childhood Cancer Caucus (www.childhoodcancer-mccaul.house.gov) 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. Congressmen Michael McCaul and Chris Van Hollen serve as the Co-Chairs of the Childhood Cancer Caucus. The event will be in the Congressional Auditorium, Capital Visitors Center. For more information, contact Andy Taylor (Andy.Taylor@Mail.House.Gov) or Erika Appel (Erika.Appel@mail.house.gov)
Saturday, September 20, 2014 Tentatively 3:30 p.m. ~6:30 p.m.
CureFest Welcome Reception
A welcoming event the night before at Nationals’ Stadium. This is the home of the Washington Nationals baseball team. This event is intended to be a casual family-friendly event being hosted by a group of foundations from the Washington-area. The cost of this event is $15 and includes dinner and dessert. The welcome event is sponsored by Stillbrave Childhood Cancer Foundation, Arms Wide Open Childhood Cancer Foundation/The Truth 365 and Kyle’s Kamp.
Saturday, September 20, 2014 7:30p.m ~8:30 p.m
A Night of Golden Light
A Night of Golden Light 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 gather in front of the White House holding gold lights. The mission of the rally is to generate public awareness for childhood cancer. For more information, contact Tony Stoddard (firstname.lastname@example.org)
Sunday, September 21, 2014 9 a.m. to 1:30 p.m.
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 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.
Over 100 childhood cancer foundations and groups are expected to attend CureFest. (Last year 51 foundations and groups attended.) Over 1,000 individuals have indicated they will be attending, including over 300 volunteers. It is a family-friendly event with games and activities for all ages. The event will include live music, entertainment, and speeches by prominent pediatric oncologists, elected leaders, as well as children and adults impacted by childhood cancer. Dr. Peter Adamson, the Chair of the Children’s Oncology Group (COG, a pediatric cancer clinical trial network) will provide a keynote address. Featured will be moving tributes for children who have or have had cancer. The National Park Service agreed to allow us to host CureFest on the newly-renovated main Mall close to the U.S. Capitol. This is a much more prominent location and is very close to public transportation, food vendors and public restrooms. Go to the CureFest Facebook page and “like” the page so you can be updated on all the information as it happens.
Registration is now open for CureFest for Childhood Cancer 2014! Be a part of the growing childhood cancer movement and attend this important event on the National Mall in Washington, DC on September 20th and 21st.CureFest Walk. Go to www.curefestdc.org
For the first time, CureFest will include a 3-mile walk on the National Mall. Participants will enjoy historic views of the U.S. Capitol, the Washington Monument, The World War II Memorial, The Lincoln Memorial and The White House.
The CureFest Walk was added for several reasons: One reason was to increase 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. There is a $20 per person registration fee to help offset the costs of the event. Register and get a free T-Shirt. Fees are waived for families directly impacted by childhood cancer. A second reason is to provide foundations with a way to raise funds for their individual missions. When participants register for the Walk they will be have the option to raise funds for any childhood cancer foundation or group that endorses CureFest. Foundations do not have to attend the event but must be an established 501(c)3 charity in order to receive funds. Payments will be distributed to foundations through Crowdrise.
Last year half of the 51 organizations that attended CureFest indicated that they could not afford to pay an event registration fee of any kind. This meant that two foundations (Journey4aCure and Arms Wide Open Childhood Cancer Foundation) had to use their funds to cover the bulk of CureFest’s costs.
To pay for the operational expenses of CureFest (permits, security and rentals of tents, tables, chairs, generators, portable toilets, a stage and more) we are hosting an online auction through 24 Auctions. Our goal is to raise approximately $30,000 though the auction which opens on August 7. In order to reach this goal we will need the support of several childhood cancer foundations and advocates. Donations to the auction are being accepted at this time at https://www.24fundraiser.com/curefest
All proceeds from the auction and walk registration fee will be used to help offset the costs of CureFest. All foundations will have the opportunity to benefit from funds raised through the CureFest Walk and from donations received at the event on September 21, 2014
You can register for the CureFest Walk and the Welcome Event at: www.curefestdc.org. Registration is not required for CureFest attendees not participating in the Walk and for “A Night of Golden Lights.” These are both free. For more information about Curefest, contact Mike Gillette (email@example.com)
Author: Joe Baber
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