Friday, February 24, 2012

An idea I got from a group in the background of the Today Show today

I saw something on The Today Show this morning that I want to do. There were about 30 people who had small posters of pictures of children who are suffering from a disease. I didn't hear exactly what it was, but later after the Today Show has video available on the website I will edit this with the kind of disease it is. The talent didn't really speak clearly regarding the name of it.. or I just couldn't hear very well.. sorry.

I thought to myself.. "why don't parents, friends, supporters, grandparents and family members of children with Neuroblastoma go down there one day and do this"? "better yet, why not do this for like 2 days in a row to really get some attention to Neuroblastoma?" Financially 1 day is more feasible. This would bring a lot of attention to Neuroblastoma and childhood cancer in general.  I am a parent of a child who had Neuroblastoma and I should be doing this. New York is only 6 hours away from me and I am sure I could recruit people do do this with me. This is actually something I mentioned either in a past blog asked Kezia to post it on Facebook last month.. This is a great idea and I want to do it. It has also been suggested to find a few more local places to do this.. Great idea and I will search.. You are all awesome.

This is what we would need.

1. A cheap, or better yet Free place to stay for those who go from outside NYC
2. Photos printed 11x17 (or similar to that size)
3. Poster board
4. Parents, friends, supporters, family members, grandparents who want to attend. (we would have to get there super early to get prime spots) If someone can't attend due to finances, work, treatments, etc then we can find someone to hold the photo of the child.
5. A date set to do this
6. A set meeting place the morning (s) we do this
7. A mission. A spokesperson has to carry a sign mentioning a fund we will support (which has to be decided before we go)

Thoughts from people who read my blog?


  1. This is a great idea. I think a simple: "NB is killing kids. Know the signs, fund a cure" would encourage lots of people to check out google. The Today Show sounds good, but are there any local options? I am trying to think of big media-attended events in Boston, where signs could get some air time. The parade on St. Patrick's Day? Marathon Monday?

  2. Great idea and great idea to think of other locations to so this as well for attention. But here's my question - why limit sign holders to parents of neuroblastoma. If someone is willing to come out and help the cause, I don't think it matters whether they are a parent, friend, supporter, other family member, etc. The more people there, the bigger the statement. I do think the spokesperson should be a parent and that parents could be the ones out front if they want to be.

    Also, there may be parents who want to participate but can't because their child is sick or finances or whatever - maybe parents who can't go but want to participate could send a picture of their child and give permission for another person there to hold a sign with the picture on it.

    Just some thoughts. :)
    Lots of love to you and Kezia and of course lots of love for Saoirse!

    1. Good point Courtney.. I like that and I will modify the plan. I think its a great idea for friends, supporters, grandparents, family members etc.... Sending a photo if they can not attend is a great idea. I know I can get friends to come and help out... thank you :) as always you are so wonderful... I am also researching some other venues to do this.. thanks

    2. I'm so sorry for your loss!! I couldn't even imagine being in your shoes. I just wanted to let you know the disease was Histiocytosis, my son is currently going through chemo battling it. It is a rare "cancer like" blood disease that affect 1 in 200,000 children a year. Most doctors and people have never even heard of it. Your family is in my prayers.

  3. LOVE Courtney's comment and suggestions. Wish I could be there--or at any of the likely places. Maybe one day... Until then, I'll keep raising awareness from BC!

  4. Maybe all of the sign holders should also try to wear the same color, that would really attract viewers' eyes.

  5. I saw the same thing! I thought of you guys right away. Great idea!

  6. Wear GOLD cancer awareness shirts with pictures of Saiorse and RJ and other kids who fought so long but earned Angel wings.

  7. I like this idea. I've been reading Get well Gabby's page also and have been touched the most by her sister selling crafts and books that she has made. Maybe there could be an event like this and have healthy kids representing the kids who are too sick to be there. They could hold signs with pictures of the kids that couldn't be there or who have passed on. My daughter would love to do that. she is 5 and always prays for other kids who are sick. Just an idea off the top of my head. I live in NH and would love to help at an event in the Boston area.

  8. Mike I mentioned this to Kezia, but you are more than welcome to stay with us when you do this. I can fit 2 adults comfortably and a third semi-comfortably (as long as no one minds air mattresses and couches!). I can also see if any of my friends can host people... they all know about Saoirse, so I am sure many will be willing. Keep me posted! -Moriah

  9. Wow, I think it all sounds great! I wish I could be able to help out! But, I could not able to do that, but am supporting whatever you all are plan to do! Yes, I am aware of RJ's passing a few days ago. His funeral was today. My prayers and thoughts are with his family.

  10. I've been reading your blog since the story of your family appeared on CNN, and I would love to help in whatever way I can. I told your story to my Public Relations teacher and she suggested getting in touch with The Today Show before going there, as you may get lost in the crowd. And also try with other networks or shows.

    Here's a webpage where you can rent rooms/apts for short periods of time:
    My friends have used it, and it worked really good for them.


  11. Hi Mike:

    My name is Christine and I've been incredibly moved by your family's story. I also worked for a hotel for over four years. My suggestion would be to contact hotels about a room block. It can actually be a very simple process and they do it all the time for conventions, weddings, even birthdays. You want to find a hotel that is at least 3 stars or more and has a dedicated sales and marketing team rather than just a reservations department or front desk. Sales managers who are in charge of selling room blocks can actually give you incredible deals on hotels you never thought you could afford and I think the attention that your daughter's story has gotten will push them even more to bring your group to their establishment. The other nice thing about the hotels is that they come with banquet space which would be great for any meetings or events you would like to host/organize while there. Everything in one place will be very convenient for parents and children alike.