Re: help! need INFO on donation to NORDs

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Here is NORD's info fromt the PLS Awareness website, "How can I help?" page.

How can you help?

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Fund Raising Ideas/for NORD-PLS Research Fund

NORD's Rare Disease Research Grant program helps to fund research on rare diseases. When the monies in a specific disease research fund total $35,000, NORD starts the process of locating and funding a scientist to research a specific disease. NORD's PLS Research Fund contains $14,725 as of September 9, 2000. We need $20,275 to begin funding PLS research. And we must raise the money. After $35,000 is raised, NORD will take out ads in medical publications (at least 3) announcing that there are funds available for a grant on PLS. It will prepare a small brochure that will be mailed to one of its existing in-house lists of researchers, and to other lists of researchers obtained from a list service. NORD's Request for Proposals will ask for abstracts of each proposal, including a letter of intent, a one page abstract, a reason for funding, the curriculum vitae of the researcher, and brief budget outline. All proposals received by NORD are sent to its Medical Advisory Board (MAB) for review. The MAB is composed of leading academic scientific experts. They select the top proposals and then ask for a complete proposal from each of the finalists. Researchers send their complete proposals to NORD which then distributes them to its MAB for their final review. The MAB uses the National Institutes of Health reviewing standards in reaching its decisions on issuing grants. By encouraging research applicants to compete against each other, NORD’s Research Grant Program funds only the best proposals that are most likely to result in research breakthroughs that can be applied to the diagnosis or treatment of people with rare disorders. Donate to NORD1- www.rarediseases.org

Turn $1 into $2--for amounts up to $4,000 The original challenge by Mark Weber was met with an additional challenge by Thomson, Joe Alberstadt and an anonymous donor. Each challenger put up a promise of $1,000 to be paid when donations made reached that point. Each of the four $1,000 challenges has been met and matched as of August 4th. A big thank you to all who met the challenge! Now a new PLS Challenge: Dolores Carron has made a challenge in memory of her mother who passed away last September. For every $1 donated by September 28th, 2000, Dolores will match dollar for dollar, when$2,000 is raised Dolores with send in her $2,000.. Let's all help Dolores meet her goal and honor her very special mother. For a donation to be doubled, it must be accompanied by a note indicating that the donation is restricted to the "PLS Research Fund" and the "PLS Carron Challenge". NORD's address is: P.O. Box 8923 New Fairfield, CT 06812-8923 Phone If we all pitch in, we'll all win. Update: $1,655 has been rec'd by NORD towards the Carron challenge. Only $345 more to go!

Shop with Pages that Pay merchants (At the top of the home page) These merchants will pay us 1% to 22% for every purchase made thru the PLS Awarenss website. Remember to bookmark this site for easy access to them. Tell your friends and family. All monies raised go directly to the NORD/PLS fund. I will update the amount earned thru pages that pay on a regular basis. Current earnings are: $274.08 thru 9/08/00. For only a few months we are doing pretty good. Remember, Shop until you drop!

We've registered with Carebar.org and have begun our fundraising efforts via the Internet. Carebar™ is a resourcebar that works with your favorite Internet browser to make your Internet surfing more fun and productive. The Carebar has links to news, weather, sports as well as searching, shopping and much, much more. You can even order food or listen to your favorite radio station directly from the bar. But the best part is that we get 70% of any revenue generated from the bar. So every time you check the weather, search the web or even order a pizza, you help us raise money. So go to Carebar.org and download Carebar today. It’d be a big help!

From one PLSer: Write a letter to your local newspaper, hit up some service clubs, (Rotary, Lions, Kiwanis, etc.), and I will definitly be first in line when my bank sets up their "Dress down for Charity" list next year. Too late for this year. A little imagination can make great things happen. First, you have to believe. And this is one of those special things that come from small towns. Everyone knows you and that is a definite plus. I started my personal fund drive today. So far it is only in my head, but it is started. Let's go get them. I have a goal in mind. If I reach it I will let you know. I gave myself until December.

Use matching funds from your employer to make your donation worth more. One PLSers was able to make a donation and it was matched by his employer, the total donated amounted to a whopping $2,500! Way to go!

Make a Challenge of your own to friends and family. Offer to match their donation to NORD dollar for dollar. Talk to to set this up at NORD 1-.

Make a small card that tells breifly about our NORD/PLS research fund, list the NORD phone #', website address and mailing address. Put one in all correspondence or hand out to friends and family, requesting that they remember our cause when doing their year end giving, at birthdays, anniversaries, when they are donating through United Way at work, etc, etc. Use your imagination!

Have a yard sale Ask friends, family or neighbors to help with a rummage sale. Add a bake sale in with it. Each person bringing items for sale can code their items with colored stickers. Add up the money at the end of the day, each person receives the money from the sales of their "color". They then donate the money to NORD/PLS fund and receive a tax deduction for their efforts! Ask your church or community center for parking lot sale if you aren't able to have sales in your neighborhood.

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