www.curejm.com

[jeanette]

Hi. We're planning to be in Carlsbad. I'm having trouble finding details about a couple things:

1. How do we register our kids to run in the Legoland fun run? Since our kids are just 3 & 5 can we run with them? If so, how do we register for that?

2. Do we need to formally sign up for the educational forums? Is there a charge associated with attending the educational forums? Can we audio record the educational forums (we anticipate one of us may miss part of it due to our youngest's naptime)?

Many thanks for your help on this!
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Jeanette
Grace (9) , JDMS dx'd 8/2007
Richie (7) Tetralogy of Fallot repaired 10/2005; Residual pulmonary stenosis; leucopenic

[Rhonda]

Jeanette -

Great to get your note. Shari Hume, co-founder of Cure JM Foundation, and I are organizing this national educational and fundraising forum for Cure JM Foundation.

1) To sign-up for the Legoland Kids Fun Run on Sat Jan 24th...go to www.carlsbadmarathon.com and then click on Weekend Events on the left. Then select Keeber Kids Marathon Mile Fun run. From there you can register your children for the 1 mile run. The website states that kids age 3-12 are welcome and that parents are permitted to run with their children if they like. The race is not timed and is really as they say a FUN RUN! We hope to have lots of JM kids, siblings and friends participating.

2) Educational Forum. We request all participants in our Carlsbad event to register by going to www.firstgiving.com/curejm to set up a FirstGiving fundraising page. This way, we get key contact details on who is coming and there is a waiver release related to this event. There is no charge for the educational event. We will request a contribution to help subsidize the dinner costs for Saturday night -- details to be sent out to all participants as the event date gets closer.

In terms of recording the educational event, we will need to check with our participating doctors. I can tell you that the educational event will be held in the same hotel where most JM families are staying. Also, we anticipate that the research updates will begin around 3:00pm in the afternoon.

So glad you will be joining us. We have over 30 JM families who have RSVP'd for attending and we have several JM specialists who will be sharing research updates and we'll be conducting a Q&A session.

Thank you for asking.

Rhonda McKeever
Cure JM Foundation Chairman

[PatMcNJ]

Is there anything new on this topic? I have been out of it, my son (not the kid with JDM) had a major knee surgery almost a month ago, and then the holidays hit. Now, as things clear I am trying to think about whether I should go to the Cure JM meeting at all........ I had a free flight to use, but the hotel room will cost me, along with everything else, and now I would be coming alone to boot.

I looked at some of the links, and got scared that I was supposed to have fundraised alot of $$ as well, and I didn't....

[Shari]

Hi Pat,

Yes, there is still time to attend the conference and we would love to have you there. Rhonda has booked a few extra hotel rooms at our headquarters hotel, so she could change the booking to your name if you would like to attend.

It would be great if you could let us know soon because I am packaging up shirts, hats and dinner invitations today and tomorrow....

The event is still 3 weeks away, so you could still set-up a First Giving fundraising page (I can help you with this). Of course, it's not required, but every donation helps to fund the much-needed research coming up in 2009. Send me an email at sharihume@cox.net and let me know if you will be able to attend. The events kick-off on Friday, January 23rd and go through Sunday, January 25th.

We hope you can attend; and I hope that your son is recuperating well from surgery.

Thanks,
Shari Hume
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www.curejm.com