November 2012

SDSF logo final
Fundraising Challenge  
Happy Spring!
Our SDS community has experienced tough times this fall and one way that we can feel proactive about this devastating disease is to help raise funds that will benefit us all.

We need your help! The next, 7th, SDS Scientific Congress is scheduled to be held in November 2013 in Toronto, Canada and each  SDS family/support group around the world has been asked to contribute $15,000 toward this important event. Our goal is to raise this amount from within our American SDS community (and any other SDS folks who aren't part of an SDS community in their country) so that this Congress can continue to be held and lead the scientific community toward a cure.  


The individual who raises the most funds on behalf of the SDS Foundation to support the SDS Scientific Congress will receive:


1 complimentary registration to the SDS Scientific Congress plus a two-night hotel stay in Toronto (estimated combined value of $800 USD). The minimum donation amount necessary to be eligible for the complimentary registration + hotel stay is $1,500 USD (may come from many donors in your name.)


 ~About the SDS Scientific Congress 

This is an international conference focusing only on SDS research. Since 1997 the SDS Foundation has provided financial support for this conference as scientists and doctors from around the world gather to present, share and debate the most current research on SDS. This kind of conference leads to progress for more and better SDS treatments as well as critical thinking about how to cure SDS - which is still far off but important to strive towards.


Please refer to the GET INVOLVED page on our web site for our tax ID #, Matching Gift # and other ideas and items to purchase.


On behalf of the Board 


Blair Van Brunt
President SDSF
In This Issue
Fundraising Challenge
FUNd Raising Ideas
Planning a Fundraising Event
Join Our Mailing List!
SDSF Important Links:
SDSF web site

Donate to SDSF

2012-2013 Vaccine Info
It is usually recommended for SDS patients to receive shots only. no mist.

Receive a New Family Packet








Please help us fund our the next SDS Scientific Congress to be held in November 2013 in Toronto, Canada. One winner will win a free registration and 2 nights hotel and if you bring a friend/family member, all they will have to pay is the non-profit registration rate plus airfare.

Here's what family members who have attended have said about their experience  in attending this amazing conference:

"Although this conference is not geared towards the families, it is wonderful to meet so many doctors who are hard at work researching treatments for this disease"
"The technical language is difficult to understand but I got the gist of what is happening in  
the research world with SDS and it gives me so much hope that our kids will have a future" 
"As hard as it is to have a child with a rare disease, I can attend a conference like the SDS Scientific Congress and feel that I am a part of helping my child"


SDS Scientific Congress 2011    poster presentation from 2007 Congress   6th Congress logo


Here's how this works: Starting now (whenever you read this) through December 31st, the person/family who raises the most money above and beyond $1,500 wins!


This money can come from corporations, family members, friends etc. All donations must be in check, cash, credit card through our web site (Paypal),  

and may not be in-kind donations.  


When you ask your family/friends/companies/churches/temples etc. to send in their donations, please ask them to add a note that states who the donation is associated with (this should be the name of the fundraising organizer) so that we can keep track of the funds that are sent in. The note can be on the check, in a separate email, separate piece of paper or a call to our 1-888-825-SDSF (7373) number. You can also ask them to send the donations to you, and you can then send everything in at once with a note. Whatever works best for the donor.  

Please do not create a separate bank account for this purpose as it is against the law.


Please feel free to call 1-888-825-SDSF (7373) anytime to discuss questions, comments or possible fundraising ideas with us. I personally have done quite a bit of fundraising and look forward to helping you plan a strategy or event. You can also read the article below for some easy fundraising ideas. Remember, it does take money to make money but we can help you figure out a way to keep your costs down and how to recoup them.


Please refer to this link to review tips and thoughts on fundraising



SDS Rubber Bracelets can be bought through SDSF


and sold at any of these events below. We sell them for 10 @$25.00 and you can re-sell for whatever you feel your market will bear.  


Alumni Reunions - sell SDS Rubber  

Art Exhibit - of locals or kids - charge admission/sell tickets

Auction/Silent Auction -get donated items from friends, family and local businesses.

Bake Sale

Balloon Bouquets - buy wholesale, sell retail

Bazaar And Fair - charge for admission and food and drink

Block Party - sell SDS rubber  

Box Lunches -make them yourself and sell at retail

Breakfasts (Pancake,International Food, etc) - sell admissions or single meal

Car Wash - get volunteer students, ask fire dept for access to water

Celebrity Lunch Or Dinner -charge admission

Christmas Craft Sale

Christmas Wish Tree

Craft fair - charge admission and ask each vendor to donate a portion of their proceeds

College Final Exam Survival Kits -sell to friends/family

Community Festival Consignment Items Sale

Cookoff Contests (Dad& Daughter, etc.) - charge entry fee

Easter Gift Baskets for sale

Fashion Show Luncheon

Father/Daughter Dance -

Flower Sale -- Mother's Day

Game Contest Marathon

Guess Beans In Jar Count

Hobby Fair

Home Tours - charge admission

International Foods Sampling -charge admission

 Letter Writing Campaign - perhaps the easiest of all! Click here to see sample letter that you can mail/email to family/friends and include our Donate page link in the email for fast and easy giving. Marathon or any kind of running event - check out separate  article on this

Outdoor Concert

Poker Game- charge entry fee and re-supply of chips. Winner can donate winnings to SDSF

Pet Shows - charge admission and get donated prizes

Rummage/Garage sale 

Supper With Ticket Sale (Chili, Hamburger,Spaghetti, Pizza, Barbecue, etc.)

Ticket Sales Of Door Prizes At Special Events

Tournaments/Events (golf, walk/run event,tennis, softball, chess, etc.)-see separate article

Used Book Sale

Wine And Cheese Tasting's - charge admission and donate portion of sales of wine to SDSF


Most of the events that need to charge admission/sell tickets can be priced by finding out what other charities charge for fundraising events in your area.



 Or anything -you- want event?

Want to plan an event in 6 weeks? Here's a guide:

  • 6 weeks out: Determine what event you think will work best for you and Ask for Help! Ask your family, friends and colleagues to volunteer to help. You'll want 2-3 people minimum as your organizing committee.   
  • 5 weeks out: Get Organized! Set a location, date & time. Determine a fundraising goal, and set up a fundraising web page (if you can) and create your invitation. Ask local businesses to sponsor/donate to your event. If you can't get dollars, get in-kind donations. Order SDS rubber bracelets or create and order t-shirts from your local supplier. 
  • 4 weeks out: Spread the Word! Email/mail your invitation. Ask friends and family to volunteer to help at the event. Reach out to civic & religious organizations you are involved with. Contact news media. 
  • 3 weeks out: Check Final Details! Print signs and other materials for event location. Gather donations of refreshments. Stay in touch with your volunteers.  
  • 2 weeks out: The Home Stretch! Send reminders to registrants and volunteers. Double check supplies and materials.  
  • 1 week out: Countdown to Success! Check weather reports. Verify contingency plans. Confirm volunteer assignments.
To get the word out and to help with registration, you could set up a blog for your race (Wordpress) which can be continually updated by you without having to have any web language and then use a Paypal button that links to our account for instant deposits for the registration fee.  There is another family who uses a web site to register people who want to run in their 5K race. They get corporate sponsors for their race as well: US Track & Field in their area,  etc. Another web site to use is which will set up the registering, do the timing if you want and so much more. They are strictly a triathlon event company.

Of course, most of them have fees but it always takes money to make money and you can possibly recoup the costs by sending us an accounting of your expenditures so we can possibly reimburse you if you can't find a donor for that purpose!! Usually a family member, friend or company or someone can help:)

SDSF can post your fundraiser on its web site but does not have the interactive capability htat some of these other sites do. But if you list it with SDSF, we can always point the reader to the site that is more interactive.

If you know someone who has a Constant Contact account, you could get them to create an email for you to announce the event and then you can use it to print posters and continue to change it a bit to send out new information about the event as it gets closer. You can also put
our Paypal link in that email.
Shwachman-Diamond Syndrome Foundation Shwachman-Diamond Syndrome Foundation


FOUNDER:  Joan Mowery


Blair Van Brunt - President 
Sue Matthiesen - Vice President 
 Donna Garfield - Secretary
Bryan Sample - Treasurer
Ed Bickle - Publicity
Sridhar Mani - Discovery Committee
Christine James - Family Support and Transplant Liaison


Joan Mowery - Family Support   

 Joyce Wall - Anna Angel Hospital Basket Coordinator


Kim McDowell - Administrative Assistant



ATTORNEY:  Ann Bodewes Stephens, Herzog, Crebs, St. Louis, MO
BOOKEEPER: Letitia Cote, Quickbooks Advanced Certified Proadvisor
Shwachman Diamond Syndrome Foundation
127 Western Avenue
Sherborn, MA  01770
1-888-825-SDSF (7373)