Ready for Christmas

We are all ready for Christmas and the New Year holidays. Nick continues to do great and is really having a great time. He is amazing as he never is down and never even mentions New York. It is if he has already blocked it out of his mind. Of course, we have to go back in January for the dreaded testing process but he knows it is just something he has to do.

The main reason for this post is that I wanted to relay a letter from Dr. Cheung regarding HU-3f8. It is becoming a reality thanks to the Band of Parents and all of you who contributed. Also, this article appeared in an Australian paper about a boy we have seen on the 9th floor and whose parents are part of the BOP. It makes us even more appreciative to be spending our Christmas at home. These are the stories that tear at my heart and caused me to get involved in the BOP.

http://www.news.com.au/heraldsun/story/0,21985,22961706-2862,00.html

------------------Letter from Dr. Cheung-------------------

Dear Mr. Lindberg: (President of the BOP)

I want to share some good news regarding the 3F8 initiative. We have obtained a commitment from a biotechnology company that provides both mission and experience to develop the 3F8 mouse antibody program. With their expertise and input, I expect the 3F8 chimerization and 3F8 humanization to rapidly move forward.

This development is a direct result of the inspiration provided by all of the families and children across the nation in our care. We thank you for your passion, determination, and energizing efforts that uniquely helped to accelerate this initiative and make this possible.

You have collectively and literally moved "mountains" and have given many something to be thankful for over the holidays. As we bring in the year 2008, your "magic" has only just begun. Please share this note with all who have helped bring us to this step. I will be providing a more detailed update in an evening meeting planned for January 24, 2008.

On behalf of all of us at MSKCC, I wish you all a peaceful and loving holiday season.

Thanks,
Dr. Cheung

Huge Money & the Wall Street Jounal

More and more people are learning about the Band of Parents and Neuroblastoma thanks to people like you who read blogs like this and support patients like Nick.

This article about an amazing dad appeared in the WSJ on Friday. I know Neil indirectly through a high school friend and we have traded email a few times in the past year.

http://online.wsj.com/article/SB119759308934528357.html?mod=hpp_us_inside_today

Speaking of high school....the Mighty Spartans of De La Salle are State Champions!!

http://www.latimes.com/sports/la-sp-hscentennial16dec16,1,6188120.story?coll=la-headlines-sports

As for the huge money....someone donated nearly $900k to the BOP. According to our treasurer, the BOP account is over $1.2 Million. Lets keep the momentum going and please keep spreading the word. This is happening!

Watch here for details on a huge Nick Lynch event. Please save the date of February 23rd. We are planning a dinner/auction.

Check this out -- THANKS Everyone

http://www.cookiesforkidscancer.org/Pages/Page.aspx

HU-3F8 Becoming a Reality - $1m Raised Already!!!!!!!!!!

Hello Nick Lynch Fans:

I am pleased to paste the following information regarding HU-3f8. MSKCC is a huge organization but we have made a difference and they are moving forward on the Humanized Version of this Neuroblastoma Killer called 3F8.

The fund raising must continue so stay tuned for a huge Nick Lynch event at the Granite Bay Golf Club in January. Details coming soon.

----------------------------------------------------------

Hello Band of Parents -
Please see the following correspondence that was sent to the BOP Executive Committee from Sloan yesterday. Thanks to everyone for making this initiative so successful in it's early stages. We'll let you know more about a meeting and next steps with the hospital soon. Happy Holidays!
With Hope -Gavin LindbergPresidentBand of Parents
In response to your recent requests for updates and a time for Dr. Cheung to meet as a group, I am sending this brief summary. We are seeking to arrange a meeting for early to mid-January to provide a more comprehensive update and plan, and we will send a potential date and time out to you, once identified. Please share this email with other involved parents to keep all informed.
In the meantime, I an happy to advise you that MSKCC has made the commitment to move forward with the project to humanize the 3f8 antibody, as dollars to support this work are identified. As a result, Dr. Cheung has been able to commence, and is authorized to complete, negotiations with outside companies to perform all or aspects of the work to engineer and produce the product, which is not contingent on having funds in hand. He is quite enthusiastic about two outside firms in particular currently interested in developing the antibody, and talks continue.
Your fund-raising efforts are to be applauded. We estimate over $1 million dollars has been raised to date for this effort from The Loneliest Road campaign, a pledge of intent from an outside, private foundation, and the Band of Parents' cookie sales and on-line auction. No funds from any of these entities have been received here as yet, but a "Neuroblastoma Initiatives" Fund has been segregated here, and any giving in support of neuroblastoma research, not otherwise stipulated, is being directed to this entity, including MSKCC's on-line donation capability. A small amount has been received to date (< $100,000). We encourage interested donors to make these contributions directly. Their gifts may be made payable to 'Memorial Sloan-Kettering Cancer Center', with a cover letter indicating the gift is in support of the antibody initiative, and the funds will be credited accordingly. It is not known what this endeavor will ultimately cost, but we are committed to bringing this through manufacturing to the lab and ultimately through clinical trials and production for all who will benefit from its use.
Media requests have been facilitated and potential donors have been responded to by me or Zeena Abdulahad, our Development Officer, as you all have directed them to us. The BoP cookies are on sale in MSKCC's gift shop today.
Dr. Cheung will be prepared to fill you all in at the January meeting on where his negotiations stand and his projections for next steps and timeframes. I reiterate that MSKCC is committed to this project and that dollars in hand are in no way driving the timetable or our ability to finalize and carry through on contractual arrangements. We are able to do this as a result of your demonstrated results. With the continuing combined energy, efforts, and commitment of all of you and all those on Dr. Cheung's team, we look forward to ongoing successes as we move forward together.
With our gratitude to all of you, your loved ones, and all who have responded on behalf of your precious children, we at Memorial Sloan-Kettering send our very best wishes for a happy holiday season and new beginnings in the coming year.
Sincerely, Nina
Nina J. Pickett, M.P.S. Administrator Department of Pediatrics Memorial Sloan-Kettering Cancer Center

Dr. Cheung on CNN

http://www.cnn.com/video/#/video/health/2007/12/09/snow.cookies.for.kids.cancer.cnn

Picture was taken in November, 2006

December---Already

We are in full holiday mode around the house with the entire month of December packed with holiday events and festivities. Nick loves it and has taken us on two tours around the neighborhood to look at the lights. I know that part of the attraction is that I let him drive us in the golf cart but he truely is excited by all the lights. Some houses are really decorated nice.

He is doing great. Walking to school most days, playing wall ball, ping pong, fighting with Kenny, and leaving his clothes scattered just about anywhere he pleases. Pretty normal for a little boy about to turn 10. We couldn't be happier with his progress but we know we have the dreaded scans coming up in a few short weeks.

Our efforts with www.bandofparents.com is paying off. Thanks to the many many people who are buying cookies and sending checks!! We can do this!!!