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Culture Fair Project on Scleroderma


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#1 barefut

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Posted 02 November 2010 - 02:21 AM

I am so proud and touched by my oldest son. It was all his idea to do his 7th grade culture fair project on scleroderma. Then we saw the link for students here and found all we need for his research. Thank you for putting that together Shelley! It's awesome. Now....to get all that information onto a 2' x 3' cardboard stand-up!

#2 Shelley Ensz

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Posted 02 November 2010 - 05:04 AM

Hi Barefut,

I'm thrilled that your son did a culture fair project on scleroderma! I'm glad he found our History of Scleroderma and School Report Resources handy, too. I hope you take a photo of his final presentation for us!

I also hope parents and students alike think of scleroderma for their school report and presentation projects. It does double duty, in helping to raise awareness of scleroderma!

Thanks for letting us know about your son, Barefut. And give him an extra warm hug, just from me, as thanks for helping us raise awareness.

:emoticon-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 barefut

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Posted 02 November 2010 - 05:16 AM

Thanks Shelley,

We are in the beginning stages of the project right now. I have an informational meeting tonight at the school regarding the Culture Fair.
One of the things I will ask is, would it be okay (not tacky?) to have an ISN donation box on the table with his display? If so, can you tell me how to get one? We also want to have some bracelets available. Hey! I need to get us ISN T-shirst too! I'd better make a shopping list...

#4 NorthStarHope

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Posted 02 November 2010 - 09:17 AM

Hi Barefut,

Wow this goes above and beyond the call of duty, this is such a great way to raise scleroderma awareness, the young ones are the future!!!A great big hug and many, many thanks!! In hope to find a cure for scleroderma! my saying is-''Together We Can Help''
Sincerely, northstarhope :thank-you:

northstarhope* :emoticons-i-care:  :thank-you: 


#5 NorthStarHope

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Posted 02 November 2010 - 10:06 AM

Hi, everyone

Just wannted to ask if anyone knows what someone like me can to as far as getting donations toward scleroderma, this wasn't in my thoughts at first, because I just wanted to make people everywhere aware that scleroderma exsists, but now I want to help as much as I can and I dont know where to begin, I have already spread the news of scleroderma, most people have the same reaction, Whats Scleroderma? they ask, So raising the awareness has really worked so far. any suggestions would greatly help, thanks a bunch!!

sincerely, northstarhope :)

northstarhope* :emoticons-i-care:  :thank-you: 


#6 miocean

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Posted 02 November 2010 - 12:01 PM

Hi Northstarhope,

First of all I hope your sister is doing better.

Lisa Bulman is an ISN Fundraiser. She holds a yearly "Scoring for Scleroderma" soccer tournament fund raiser and an on-line Pampered Chef Party to raise awareness and funds.

There is a "Donate or Shop now" link on the right side of the pages on the main site, but is is very subtle. There you will find ways to donate and also awareness bracelets and brochures. With all the years of using the forum, it never occurred to me to donate, or even how this site was created and managed. I donate yearly to a scleroderma group and didn't even know which one until I received a recent mailing. I will be changing my donation to the nonprofit International Scleroderma Network (ISN) this year.

Since I started developing the eNewsletter my eyes have really been opened to the time and effort put into the development and management of this site. It is really rather amazing that so many worldwide volunteers have helped to create thousands of pages available here for your use. Your donation goes to tackle scleroderma research, support, education, and awareness. There are absolutely minimal administrative costs, unlike many nonprofits where you will find most of your donations goes to paid employees and offices.

If you are financially unable to make a donation, you could become a volunteer. Or you could be creative with a fund raiser. There are many companies that let you hold parties for their products, giving you a percentage of sales. You could invite your friends and make a fun evening out of it, and they would know they are helping. You might not be able to do it online like the Pampered Chef, but could create awareness and raise funds at the same time.

Just a note: for the first time in 50 years donations to charities have gone down. The poor economy is affecting everyone. If you don't have the finances or energy to do anything, just being open about the disease creates awareness. At first I was reluctant to talk about my health with others figuring no one wants to hear it but am more open now. It is what it is. I can't tell you how many people I have talked with and told them I have scleroderma and they tell me, "Oh, my mother-in-law was just diagnosed with that," or "My friend's daughter has it." I always refer them to this site as the best resource they will find. Both my mother-in-law and my best friend's mother had it. I don't know if it is this part of the country (Northeast) but more and more are being diagnosed with it and many people will tell me they have heard of it.

Thank you for wanting to help. As you know from your sister, it is a terrible disease. Not that there are any good ones.

miocean
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#7 NorthStarHope

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Posted 03 November 2010 - 08:46 AM

Dear miocean,

I want to thank you for all you help, my sister is home from the hospital, and im crossing my fingers for a better tomorrow. I try not to go on to much about my sisters illness because I truely can't even begin to imagine how she must feel, I only know as being her sister that I feel her pain. We are also 11 months apart in age so sometimes I feel this could have been me, many times I wished it were. I also do not truely know how my sister would feel about me writing about her, so my hands are tied at times, she does know that I visit sclero.org and I have also explained to her that through this site I have met a lot of wounderful people. Im hopeing that when she feels up to it I can show her these posts and she will someday be posting along with us. Also, to raise Scleroderma awareness I have ordered mailing address lables. there is a website that lets you create your own lables and I thought this would be a great way to raise scleroderma awareness. :)

northstarhope* :emoticons-i-care:  :thank-you: 


#8 Shelley Ensz

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Posted 09 November 2010 - 09:22 AM

Hi Barefut,

How are your plans going for the culture fair?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.