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colleen
/ April 2, 2012I got this information the other day… I didnt even know they had a Childhood Cancer Action Day!!!
CureSearch for Children’s Cancer, a member of the Alliance for Childhood Cancer, is pleased to announce that registration is now open for this year’s Childhood Cancer Action Day in Washington, DC, June 4-5, 2012.
We hope you will join us for a day of issues and advocacy training and followed by a day of pre-arranged Capitol Hill visits with Congressional representatives and their staff so that members of the childhood cancer community – parents, children, and others – have the opportunity to visit Capitol Hill and advocate for important childhood cancer issues currently before Congress.
Monday, June 4, 2012 (lunch will be provided for all attendees)
12:00 PM About Capitol Hill – An Orientation for First-Time Attendees
1:00 PM Issues Training:
Creating Hope Act
Drug Shortages
Best Pharmaceuticals for Children Act and Pediatric Research Equity Act
Survivorship Bill
Congressional Childhood Cancer Caucus (House)
3:00 PM Advocate Training: How to Conduct Visits with Congressional Offices
6:00 PM Reception
Tuesday, June 5, 2012
7:30 AM Breakfast
9:00 AM Depart for Capitol Hill
10:00 AM – 3:00 PM Visits with Congressional Offices
When you register, you will be signed up to attend the training, scheduled for Hill visits, and have a room reserved at the Hamilton Crown Plaza in Washington, DC, for the night of June 4 at a room rate of $259 per night. If you do not need a hotel room, there is an option to note that during registration. Please note that transportation to/from Washington DC is the responsibility of those attending.
Registrations will be accepted on a first come first served basis so sign up today to reserve your spot. Visit http://www.allianceforchildhoodcancer.org/events.
On behalf of CureSearch for Children’s Cancer and the Alliance for Childhood Cancer, I look forward to seeing you in Washington, DC in June.
If you have any questions, please contact:
Erica Neufeld
Vice President, Communications and Advocacy
(240) 235-2201
Erica.Neufeld@CureSearch.org
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
B+ Foundation
Cancer Support Community
Chai Lifeline
Children’s Brain Tumor Foundation
Children’s Cause for Cancer Advocacy
Children’s Oncology Group
CureSearch for Children’s Cancer
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
carol
/ June 27, 2012The Creating Hope Act has passed the senate. Passed in the House of Representatives last week. This is a historic moment for the children’s cancer community as this legislation directly impacts the development of new drugs for children with cancer and other life-threatening diseases. Last step is for President Obama to sign it. Keep pushing people. This is where the money needs to be spent.
SLP
/ September 13, 2012God bless this baby boy and may he rest in peice.
morgan Holley
/ September 18, 2012oh my gosh, what an adventure u guys went through. I am so so sorry about ur little angel. when I heard the song I loved it but had know idea it was a true story. Ronan was a beautiful baby boy who was very lucky to have u for 4 years. i wish u the best and he will always be in ur heart..
from, Morgan Holley. age 14 Sacramento, CA
9-18-12
jennifer
/ September 26, 2012Am sure the baby boy was an angel he didnt desevre this i wish u the best that poor baby will always be in ur heart and ours poor little angel is up there looking down at you giving bless to you desever the best of life god bless you
Carolyn
/ September 26, 2012I am only 13 and this blog has inspired me to lov my life and stop worrying about how popular I am or how I look because I have other things to be appreciative for. This story is a story that needs to be able to Emd with a happy ending. I am inspired to do whatever I can
JOSSIE
/ September 29, 2012I LOVE YOUR SONG TAYLOR MADE YOU I LISTEN TO IT ON MY PHONE…YOU WERE A BUETIFUL BABY BOY…I HEARD YOU LIVED IN LONGVIEW/KELSO BYE A COUPLE PEOPL DONT KNOW IF ITS TRU EBUT IF SO I WISH I COULD HAVE SAW AND MET YOU….
JOSSIE
/ September 29, 2012I LOVE UR SONG TATLOR MADE YOU I LISTEN TO IT ON MY PHONE….U WERE A BEUTIFUL BABY BOY…I HEARD A RUMOR THAT YOU LIVED IN LONGVIEW/KELSO I DONT KNOW IF ITS TRUE BUT IF IT WAS I WISH I COULD HAVE MET YOU OR SAW YOU….
Sarah
/ September 29, 2012i remember watching the Stand Up To Cancer show one day & i heard Taylor sing this song & i fell in love with it, thinking Taylor lost a little brother or something.. When i looked up the meaning to the song i never thought it would be about a little boy who fought cancer.. i read this entire blog while listening to Ronan & cried. <3
Carrie
/ October 3, 2012Hey ronan and everyone who nos him i cant amagine when i heard that song i was crying so hard and for some reason i love it but i was crying and that means something i did alot of research on him and he is NOT just a kid he was a living miracle for me ronan look so sweet so i cant amagan how sweet his mom and dad are
love you ronan
Madison Miller
/ October 3, 2012I’m not sure if you’re going to see this, or even care much, but I felt like I had to write to you. Yours and Ronan’s story inspired me and I could relate on a higher level. My little brother got Myelomas. After he passed my parents fell apart. I know what it’s like to loose one you love, I can’t imagine what it would be like to loose a child. I’m an expecting mother and don’t even want to imagine what it would be like. I wish you the best and I know Ronan is being a little rockstar looking over everyone, being an angel.
marissa
/ October 11, 2012I feel so sorry
Caitlyn
/ October 23, 2012u have the saddest story i have ever heard wish u the bet RIP Ronan Thompson
mindy harris
/ October 25, 2012Katie Couric show was PERFECT today. Absolutely perfect…
Jennifer
/ October 25, 2012RIP, Ronan. I saw your story today on the Katie show and it was so touching and sad. This shouldn’t happen in life, its not fare. Since it has happened and no one can change it, may you rest in peace and look down on your family from heaven. The parents of Ronan were so strong and brave to go on televsion and tell their story for others going through this. God Bless you all forever.
Bethy
/ October 28, 2012Ronan-
R- Rockstar still rocking on
O- always On our minds
N- Never ever forgotten
A- Army guy
Rest in peace lil man<3 i love you rock on with the lord watch over your mommy<3 we all miss you your story has touched the hearts of many<3333 i love you baby boy. Maya your doing amazing angel<33333
Bethy
/ October 28, 2012Oh gosh i forgot the Last N- Never forget we love you lil man<33
gretchen and gracie
/ October 31, 2012rest in peace RONAN.<3 <3 <3 wish the best to you and family!
Gisel💜
/ November 7, 2012This website is beautiful. Ronan’s story really inspired me to live life and to also enjoy it. Whenever I am having a bad day I listen to ‘Ronan’ by Taylor Swift and it reminds me that life is hard but I have to do what ever it takes to make the best out of it.
natalie
/ November 10, 2012i am truley amazed at this. you had and still have an incredible boy, rest in peace ronan. we love you so very much. roran is truley inspiring. those 4 years were the best for him i bet, becuase he had a truley amazing family that loved and cared for him.
Sydney
/ November 12, 2012I’m 14 and my mom told me about this and taylor’s song. I got the song and was listening to it on repeat when I first visited this site. I had to turn it off and stop reading because I had started to cry. No family should have to go through something like this! Ever since then I have been coming on to this site everyday to see if there is a new post. It reminds me that no matter how bad my life can get, it could always be worse….
Amie
/ November 21, 2012Im 15, and my friend told me about the song ‘Ronan’ and soon as i heard it i cried, when i found out this site, and the blogs i couldn’t stop reading, you and your family are so brave. Ronan was Beautiful, Cancer is a whore who took a young boys life. You have inspired me so much! thank you. R.I.P Ronan. stay strong x
cecilia prado
/ November 22, 2012i love you ronan i wish you were still here
Kaitlin McIntosh
/ December 2, 2012Hello I’m only 11 years old but this website inspired me to love life and live it to the fullest and it doesn’t bother me if I’m not a popular girl it just matters that I am healthy and that my family is too. Also God Bless your family, you all went though so much and I respect you . Rest In Peace Ronan
felica
/ December 5, 2012Today was the first time I heard about Ronan, and it was because I listened to the song Taylor Swift sang in dedication to him. I broke down in tears. It’s so sad that he had to go like he did. But, he’s not gone. He will always be watching down on his family. His story is touching and I think everyone should know about it to help other kids that are going through what he did.
Stay strong Thompson family, that babyboy will always be with you <3
dessi
/ December 8, 2012me too but it was on November 27
ashley
/ January 23, 2013i prat for you guys every night
Victoria
/ February 2, 2013You shall be blessed
Mary Duggan
/ February 7, 2013My darling friend Meghan Martinez at Lil Basket Case taught me about Ronan. I can’t get him or his family out of my mind or out of my heart – and that’s a good thing. I’m in folks. I will help as I can. But for now lots of love and prayers to the Thompsons from the Duggan Sisters in Chicago.