Monday, August 10, 2015
This week-end, Tyler was married. This morning, at 5:30 am, I drove them to the airport. They are known their way to Maui. I'll post pictures later. An incredible wedding. A great victory.
Thursday, January 17, 2013
- Alexandra “Alex” Scott was a 4 years old and fighting cancer. She decided to sell lemonade to raise money to cure cancer. Word spread, and she quickly collected $2,000. At age eight Alex relapsed and passed away. In those four years she had raised over $1 million. Today her family continues her legacy with Alex's Lemonade Stand Foundation. They have raised over $60 million for childhood cancer research.
- · Georgia Cleland was diagnosed with leukemia at six years old. Her father decided to run the New York marathon to raise money. He trained a team of 38 runners, who collectively raised $322,000. They became Team in Training, and have now trained over 400,000 runners. Last year they passed the $1 billion mark in funds raised for cancer research.
- · Laura Graves was a teenager with leukemia, and could not find a matching bone marrow donor within her family. So they did what had never been done before... took the search to the general public for a match. After Laura's successful transplant, her family began creating a nationwide network to register bone marrow donors. They continued building their network, even after Laura passed away two years later from a relapse. Today, The National Bone Marrow Donor Registry houses a database of more than 11 million donors and facilitates in 200 life-saving transplants a month.
- · The day after my son was diagnosed with cancer, a large gift box arrived. The word “Victorious!" was written in bold letters on top. Alicia Rose, another teenager fighting cancer, had experienced the loneliness and unique struggles of teens on a children’s cancer floor. She decided to create gift packages, designed exclusively for teens fighting cancer. Today the Alicia Rose Victorious Foundation delivers gifts to teens with cancer throughout the U.S. They have also built Teen Centers in over 40 hospitals, with large, DVD players, movies, computers, video games, pool tables, air hockey tables, foosball tables, and more.
- · At age 14, A.J. Piniewski lost his battle with cancer. Only a few months later his father, Bob Piniewski, flew to MD Anderson in Texas to meet my son undergoing the same treatment. He came to comfort us, as well discuss his idea for a foundation to unify the voices of all the families fighting for a cure to childhood cancer. Today PAC-2 (People Against Childhood Cancer) promotes awareness, shares information, provides resources, and is now the largest data base of foundations, causes, and policy updates in the world of pediatric cancer.
Friday, January 11, 2013
Monday, December 17, 2012
Saturday, July 7, 2012
A couple of cool changes...
1. The race is now sponsored by Nationwide Children's Hospital, where Tyler received much of his treatment.
2. The race will run through The Shoe, running into the stadium, circling the OSU football field.
If you would like to support my run, go to KyleRunning.com
Friday, June 1, 2012
Let’s work together to send thousands of messages to Capitol Hill on behalf of the 13,500 children who are diagnosed with cancer each year in the United States.
About the Alliance for Childhood Cancer
Founded in 2001, the Alliance for Childhood Cancer is a forum of national patient advocacy groups, and medical and scientific organizations. These organizations meet regularly in Washington DC to share ideas and concerns and work collaboratively to advance policies leading to improved research, public education, and diagnosis, treatment, supportive care and survivorship for children and adolescents with cancer.
Members of the Alliance for Childhood Cancer include:
|American Academy of Pediatrics|
American Cancer Society
American Childhood Cancer Organization
American Pediatric Surgical Association
American Psychological Association
American Society for Radiation Oncology
American Society of Clinical Oncology
American Society of Pediatric Hematology/Oncology
Association of Pediatric Hematology-Oncology Nurses
Association of Pediatric Oncology Social Workers
Cancer Support Community
Children's Brain Tumor Foundation
Children's Cause for Cancer Advocacy
Children's Oncology Group
CureSearch National Childhood Cancer Foundation/Hope Street Kids
Lance Armstrong Foundation
Leukemia & Lymphoma Society
National Children's Cancer Society
National Coalition for Cancer Survivorship
Patient Advocate Foundation
Pediatric Brain Tumor Foundation
Sarcoma Foundation of America
Society of Pediatric Psychology
St. Baldrick's Foundation
Wednesday, May 16, 2012
The Creating Hope Act will stimulate research by pharmaceuticals and save kid's life's. As it makes its way thru the legislative process, KIDS V CANCER and we ask for your support at key junctures. TODAY RIGHT NOW IS A KEY JUNCTURE! Please take action today - 2 phone calls. THANKS!! Here's the request from our friends at KIDS v CANCER:
Last week, the US House of Representatives Energy and Commerce Committee passed the Creating Hope Act as part of a larger FDA bill! We now have the Senate to go.
Tuesday, the Senate will consider an FDA bill on the Senate floor that does not yet include the Creating Hope Act.
We need your help to ensure the Creating Hope Act is attached to the Senate FDA bill. Senators Harkin (D-IA) and Enzi (R-WY), as the Chairman and Ranking Member of the Senate HELP Committee, have the power to include this important language in the FDA bill.
Please take 5 minutes TODAY to call Chairman Harkin’s and Ranking Member Enzi’s offices and tell them why this is important to you.
We will only be successful if YOU take ACTION immediately. Senator Harkin and Senator Enzi need to receive hundreds of calls before 5pm EST today to understand that it is important for pediatric cancer patients. YOUcan make the difference.
Make your calls and then please share this action alert via email, Twitter and Facebook.
Below are the numbers for Harkin & Enzi’s offices. Please speak with the staff member who answers the phone, using the script below. If no one answers, leave a voicemail. Be respectful to the staff, but express your urgent concern.
Physician/researcher: I am a physician working to treat pediatric cancers / rare diseases calling because I’m concerned that the Senate has not yet included the Creating Hope Act in the FDA bill. The Creating Hope Act provides market incentives for new drug development for pediatric cancers and other rare pediatric diseases. Please include the language from the House FDA bill’s Creating Hope Act in the Senate FDA bill.
Please share how your calls went on our Facebook page https://www.facebook.com/
More information on The Creating Hope Act:
Although the United States is a leader in drug development, almost no drugs are being developed for American children. Some 27% of those affected by one of the 350 most “common” rare diseases die before their first birthday because there are inadequate or no drugs for these babies. In addition, in the past 20 years, there has been only one initial FDA approval for a drug for any pediatric cancer. Because the market for pediatric rare disease drugs is small relative to other diseases, pharmaceutical companies cannot develop drugs for children with serious and rare diseases.
The Creating Hope Act generates market incentives for drug development through the establishment of a priority review voucher for pediatric rare diseases. Under this program, a company or institution that develops a drug for a pediatric rare disease and receives FDA approval also receives a voucher. That voucher comes with rights to priority FDA approval for any other drug which results in the second drug getting to market many months earlier. The voucher would be fully transferable.
The Creating Hope Act does not require any tax payer spending and has bipartisan support. It has 168 cosponsors in the House. On September 23, 2011 Representatives Michael McCaul, G.K. Butterfield, Sue Myrick, and Chris Van Hollen introduced the Creating Hope Act (H.R. 3059) into the House. It was introduced into the Senate on March 17, 2011 by Senators Robert Casey, Scott Brown, Sherrod Brown, Al Franken, and John Isakson (S. 606).
On May 9, 2012 the House Energy and Commerce Committee passed the Food and Drug Administration (FDA) Reform Act of 2012, which includes the Creating Hope Act as Section 865. Chairman Upton and Ranking Member Waxman agreed to Section 865, which modifies the Creating Hope Act to be a demonstration project of three vouchers with a sunset and GAO evaluation.
The Creating Hope Act fills an important gap in policy initiatives to encourage drug development for pediatric rare diseases. BPCA and PREA only provide for relabeling of adult drugs for use by children, not for new children’s drugs.
The Creating Hope Act builds on the “FDA Amendments Act of 2007,” which established a priority review voucher for drug development for neglected tropical diseases. The Creating Hope Act of 2011 closes a loophole that allows pharmaceutical companies to receive vouchers for drugs that are already marketed abroad and allows the vouchers to be transferable.
Tuesday, March 20, 2012
On behalf of Nancy Goodman, Founder of Kids v Cancer, and kids everywhere, today we ask for your immediate support for the Creating Hope Act!! Kids v Cancer has reached a critical point in the passage of the Creating Hope Act!
Thanks to the thousands of you who wrote their members of Congress and urged them to cosponsor the Creating Hope Act, 150 Representatives have pledged their support.
We hope to pass the Creating Hope Act by attaching it to a major piece of legislation, PDUFA. However, at this time, the draft House Chairman's mark has been issued without the Creating Hope Act. We are disappointed, but we still can get it attached if we act now.
We can still ask that the Creating Hope Act be attached to Chairman Upton’s mark -- eg part of the first draft of PDUFA considered by the Energy and Commerce Committee of the House of Representatives. In addition, we can ask Congressman Bilbray to introduce the Creating Hope Act as an amendment to PDUFA.
Let's give one final push -- along with everyone you know, please call these Members of Congress listed below TODAY and urge them to pass the Creating Hope Act!
For each call, please tell the receptionist why you care about pediatric cancer and other pediatric rare diseases.
There has only been ONE initial FDA approval for a pediatric cancer drug in 20 years! We need the Creating Hope Act to change this!
Please make 3 calls:
The Ask: “Please include the Creating Hope Act in your Chairman’s Markup of the Prescription Drug User Fee Act- PDUFA.” (pronounced pih-Du-fa)
The Ask: “Please urge Representative Bilbray to include the Creating Hope Act in his Chairman’s Markup of the Prescription Drug User Fee Act- PDUFA. If the Creating Hope Act is not attached, please introduce it as an amendment to PDUFA” (pronounced pih-Du-fa)
The Ask: “There is an immediate need for innovative drug development in childhood cancer and other rare pediatric diseases. Please support the Creating Hope Act so we can get new drugs to children as quickly as possible!”
(Explanation: As the ranking Democrat, it’s important that Congressman Waxman not oppose the Creating Hope Act even though it grants benefits to the drug industry.)
Please also let us know you called! Post on the Kids v Cancer Facebook wall, or email us at: Adrienne@kidsvcancer.org.
On behalf of sick kids everywhere, thank you.