CureSearch Network News

Gold Ribbon Days 2005

 

More than 300 childhood cancer patients, families, health professionals and advocates from 31 states traveled to Washington DC to participate in the 5th Annual CureSearch Gold Ribbon Days, held June 13-15, 2005 . It was the largest turnout in the history of the event to elevate childhood cancer to national public policy priority.

 

Gold Ribbon Days advocates took part in more than 200 scheduled visits with their members of Congress and staff.  Throughout Gold Ribbon Days, multiple members of Congress addressed the crowd of participants acknowledging their efforts and praising them for their courage and fighting spirit. Keynote speakers included Senator John Kerry (D-MA), Senator Jeff Sessions (R-AL), Senator Blanche Lincoln (D-AR) and Congressman Michael McCaul (R-TX). During the Congressional reception, Congresswoman Deborah Pryce (R-OH) and Congressman Patrick Kennedy (D-RI) were presented with CureSearch awards to recognize their commitment to reach the day when every child with cancer can be guaranteed a cure.

 

Miss America 2005, Deidre Downs, spoke during the keynote session and participated in the entire three-day event by interacting with families and taking pictures with the children. During Gold Ribbon Days, she met with15 key members of Congress to advocate for increased federal research funding to support the work of the Children’s Oncology Group.

If you are interested in helping to increase federal funding for childhood cancer research please visit http://capwiz.com/curesearch/issues/  and click on Legislative Alerts and Updates. For more information and photos of Gold Ribbon Days, please visit www.curesearch.org/GRD05.aspx

 

Congresswoman Deborah Pryce Introduces a Resolution to Raise Awareness about Childhood Cancer

On Wednesday, June 15th, during Gold Ribbon Days, Congresswoman Pryce (R-OH) introduced House Resolution 323 expressing Congressional support for childhood cancer awareness, treatment and research. Children and families attending Gold Ribbon Days circulated the Resolution and requested support from their Members of Congress. You can build support for this resolution by asking your Member of Congress to cosponsor H. RES. 323. To send a message to your member of Congress please go to http://capwiz.com/curesearch/issues/  and click on Legislative Alerts and Updates.

 

Major League Baseball Supports CureSearch

CureSearch was honored to host Bob DuPuy, President and Chief Operating Officer of Major League Baseball, during Gold Ribbon Days 2005. Mr. DuPuy spoke at the Congressional Reception in which Major League Baseball honored Congressional leaders and commended them for their support for additional funding.

 

Mr. DuPuy emphasized Major League Baseball’s continued commitment to CureSearch and invited the Congress to participate in this summer’s league-wide promotion to raise awareness and funds for childhood cancer research.  Mr. DuPuy announced that the promotion will run from August 7 through September 5 and is expected to involve every major league team and to raise over $1 million.  Major League Baseball plans to make public announcements during the All-Star Game Festivities in Detroit , July 8-12.    

 

Alliance for Childhood Cancer Hosts Survivor Briefing on Capitol Hill

On June 15, 2005 the Alliance for Childhood Cancer hosted a briefing for members of Congress and staff on survivorship of childhood cancer. Briefing participants were welcomed by Congressman Steve Israel (D-NY) and featured three childhood cancer survivors whose testimony served to educate members and their staff about the issues that affect survivors of childhood cancer. The Alliance has developed principles addressing four areas related to survivorship: access to care, systems of care, insurance coverage, and research. The briefing addressed the need for long-term follow-up care and insurance coverage for cancer survivors, as well as the need for more research on the late effects of cancer. For more information about the Alliance for Childhood Cancer and to view the Principles for Survivorship and Long-Term Follow-Up Care for Survivors of Childhood Cancer please go to www.childhoodcanceralliance.org/

 

CureSearch Young Artists Program

CureSearch has launched a free eCard program featuring the artwork of childhood cancer patients, past and present, and their siblings in our online Gift Shop at www.curesearch.org/giftshop Send a note to family and friends while helping raise awareness of childhood cancer.

 

CureSearch will be creating a 2006 CureSearch Young Artists Calendar! But, we need your help to bring new artists and artwork into the program.

 

I f you know a child or teen who may be interested in submitting artwork for the calendar or other CureSearch gift items, please direct them to visit www.curesearch.org/giftshop and click on the “Become a Young Artist” icon or contact Laura MacLean at laura.maclean@curesearch.org   if you have any questions.

 

CureSearch Speakers Bureau

CureSearch is seeking volunteers to participate in a Speaker's Bureau. Speakers would be asked to talk about childhood cancer and CureSearch to groups in their local communities. As a volunteer and someone committed to finding a cure for childhood cancer, you are the ideal and most listened to messenger! Training and materials will be provided. For more information, please contact Betsy Mowell at betsy.mowell@curesearch.org or 1-800-458-6223 ext 2234.

 

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June 17, 2005

Hello!

I hope you all are doing well. I returned from DC late Wednesday night and I think that Gold Ribbon Days was a success! Grandma Jean attended the event with me. Monday night we attended a Welcome Reception where we were able to meet wonderful people from all over the country. There were over 300 people from 30+ states who attended this year's event. Miss America, Deidre Downs, spoke to us at the Welcome Reception. She is a spokesperson for CureSearch and curing childhood cancer is her platform. She works tirelessly spreading the word about the need for increased funding for research and wants to be a pediatrician. I was not a fan of the whole pageant process before this but I can tell you I am a big Miss America fan now! What an amazing woman!

Tuesday morning we were addressed by Congressman McCaul from Texas and Senator Sessions from Alabama. We were promised their support in our request for funding. We listened to a presentation from Dr. Reaman, Chairman of the Children's Oncology Group. He spoke to us about current research and the need for additional funding to conduct more in depth research. In the afternoon we received advocacy training from James Fabiani of Fabiani & Company, a government affairs and federal marketing firm. He guided us on how to speak with the members of Congress on Wednesday to effectively communicate our stories and our requests. Later Tuesday afternoon we attended a session for bereaved families. A woman from CureSearch spoke to us about our grief and then several parents spoke and shared stories and readings. A banner was created for this year's event to honor all of the children whose lives were taken by cancer. We hung pictures and poems of our children around it.

On Wednesday we were addressed by Senator Kerry from Massachusetts and Senator Lincoln from Arkansas. Then we loaded up and went to Capitol Hill. We split up into groups by state to meet with the Senators and Congressmen. We met with Senator Allen, a representative from Senator Warner's office, Congresswoman Thelma Drake and a representative from Congressman Bobby Scott's office. We shared our stories and asked for $9,500,000 to be appropriated in next year's budget for Childhood Cancer Research. Time will tell whether or not we made an impact. We will be following up with each office to make sure that our requests are not forgotten. 

My mom and I met some very amazing people. Other parents who lost their children and children who have survived cancer but are now facing many difficulties as a result of the treatments that saved their lives. We feel very fortunate to have attended this event. Thank you for all of your support and I will keep you posted as new information becomes available. 

God bless all of you,

Amy

We Remember Them...

For the incredible contributions these children made to the search for a cure, we honor their names and their memory. They fought bravely on the frontline, trying every new and unproven treatment available. Their courage and determination helped create the treatments that are saving the lives of young cancer patients around the world today. 

At the rising of the sun and its going down

We remember them.

At the blowing of the wind and in the chill of winter

We remember them.

At the opening of the buds and in the rebirth of spring

We remember them.

At the rustling of the leaves and in the beauty of autumn

We remember them.

At the beginning of the year and when it ends

We remember them.

As long as we live, they too will live,

They are part of us,

We remember them.

 

"We Remember Them" banner

Artwork for this year's t-shirt. The t-shirt reads "Childhood Cancer Stinks"

Congressman McCaul from Texas                            Paul Burke, President of CureSearch

 

Dr. Reaman, Children's Oncology Group                          James Fabiani, advocacy coach

 

Senator Kerry                                                         Senator Lincoln

 

The Capitol

 

               

Group from Virginia                                                                Senator Allen

J.K. Robinson from Senator Warner's office                Grandma Jean outside Congresswoman Drake's office

      

Me & Karen McKinley, Hem/Onc. Social Worker at CHKD

Patty & me

Patty's 12 year old daughter Melissa died from a GBM-the same type of tumor that Taylor had