program for kids

[NPFwebmaster]

Dear Parents and Caregivers,

The NPF is thinking about offering a special program for kids, youth and teens during the NPF 2002 National Conference in Orlando, Aug. 9-11. We would like your input as to whether this is something your children who have psoriasis would be interested in attending. We are only in the beginning planning stages and if we do not receive enough interest for this type of program, we will cancel it. Please let us know:

1) Will you and your child be attending the conference (if the answer is no, is the reason financial, lack of interest, inconvenient time or place, etc.)
2) What types of topics or activities would you like to see in a program for children and teens?
3) Would you and your child be more interested in an educational program or just a time to meet and interact?
4) How long do you think the program should last?
5) What age groups should be included? Should kids of different ages be separated into different groups?
6) Any other ideas regarding this program?

Please post your thoughts as a reply to this message or contact Norah Barnard at (800) 723-9166, ext. 25, or norah@npfusa.Thank you for your input.

[PJ Leary]

NPF:

Very cool! You have impressed me once again, even though this particular subject doesn't really pertain to me. I do have a child with mild p, but she will not be attending because, at 16, she has much better things to do with her time ( so she says ).

PJ Leary

[mrice]

It would be very interesting; I fully support it! My son (13) and myself have P and I have had no luck here in Michigan finding a support group for him; I have found this to be even more devastating for him being a teen than I have ever experienced myself! I would participate however there is a financial issue or concern for us.

Thank you for thinking about "OUR" P-kids

Mrice

[SANDRA LEE]

Dear Webmaster,
We are seriously considering Florida. But I need to know when the dates are for Camp Horizon. Do you have any informatio on this yet? Kylynn hasn't seen it mentioned on the kids page. If the two don't conflict, we will be driving to Florida.

You should break the kids ages up 12-14 and 15+ but the parents should be given an opportunity to meet and share treatment secrets.

In talking to others in my community,I have been suprised to find so many young adults with "p".I have given treatment advice on where to go and what to ask for, to 2 young men's families just in the past two months.
These guys are in their 30's. They are devasted by their illness and they didn't know where to turn.

Can't you get somekind of National Campaign going on NPF.Maybe some billboards in key locations around major cities. Put local peoples faces on the boards and the NPF 800 number. Like, John Doe, Philadelphia. Sad but true picture of a guy with psoriasis. Man, lady, child, show all the "normal" people what their "normal" frends are hiding from them. Living in fear. Living in embarrassment. Let us educate the world by asking for their help. People melt when they see a childs face, especially a child with a disease.You can make OUR foundation as famous as the milk ads.

Make these psoriasis sufferers famous in their own neighborhoods. They will have neighbors coming up to them to talk and this is how the word will be spread. You have an army of resources that you haven't even tapped yet.Let us help you. Then everybody wins.

Take care,
Sandy

[Tephywashere]

Was planning to attend the conference but alas finances and timing (FL is a long way from NV) will prevent us from this year.... I think getting the kids together would be a great thing....maybe some small activity with some education but not hitting them over the head....they will probably get all the education they need by talking to one another....I know a group there is a group of our kids out there that are in the under 12 realm that would love to hang out with someone else with spots! Thanks again for including us!

Sandy I think yours is a great idea! Are you in advertising?
Emily's Mom
Stephanie

[Wolf3693]

http://www.aad.org/campdis.html
heres all the info the camp horizon and camp discovery and teen camp
also at the bottom of the page is an application
but it needs to be off by 16 APR 2002
laters

[Leslie Guyne]

I think this would be great! I have a 7 year old that has had P since age 4. I also have had P for 28 years and PA for 5 years. My oldest daughter has no signs of it yet. she is 9. We would love to be involved with meeting others who also have spot's and more... like other family members that don't have it yet and how they deal with living/knowing family/friends with P.
Please let me know more!!!
When ? Where? How long?
Yes money would be an problem mostly hotel cost.This would be 1st on my things to do list.
My idea for you is:
moms and daughters groups,fathers and sons groups,
play date/activities/meeting/information swap.
by age groups 0-10,11-16,17-20,21years and up(Adult forum)

[PJ Leary]

NPF:

LISTEN!! I know you do. These young parents cannot afford even the modest expense of attending the conference. Have a heart. Help them!! NOW. Later is a waste of time and resources.

Give them a fund to apply to. Anything that will get them THERE. These people are our tommorrow. Please let us help them today.

I once was one of those children, and my heart understands what they need. Please let NPF reach out, NOW. Do for them what you could not do for my generation.

THEY are our future. Hear my plea. In the future, they shall lead us all.

PJ Leary