Fund Raising Basics UNDER CONSTRUCTION!

[Cheryl Biermann]

UNDER CONSTRUCTION AND ONLY FOR VIEWING AT THIS TIME-WILL NEED TO BE REVIEWED

 

As our progress is leaping forward due to all of the new and exciting research gains within the past couple of years and the advent of this wonderful interactive site, another wonderful development has occurred...More fund-raising events!  The need to keep the funds coming in during this time of rapid research advances in a time of recession is going to be a challenge.  We are very thankful to the people who are willing to give their all for a few months in order to see that this important work continues.  Outlined below are some of the past events we and our members have already achieved.

 

St. Louis:  Trivia/auctions, Crazy Bowl Day, Macy's Shop for Charity, Evening on the Robert E. Lee Riverboat/Dinner & Music, Raffles, Wal-Mart's matching program, They'll match your proceeds of wat you earn while using their lot at whatever type of fund-raiser you do, Grade School fundraisers included:  Popcorn Friday (50 cents a pop), Crazy Hair Day, and Holloween Dress up day.  (They raise cose to $2,000 the past few years, per year!), Memorial to Joan Pallme

 

*New York:  Annual Ryan's Hope Gold Tournamet

*Maine:  The Garlic Festival,

*Talbotts:  Hike for Hyde and carnival

*Carolina:  Raffles

*New York:  Requests for donations results in very generous amounts

 

Paperwork required to hold a fund raising event,

 

Copy of the Foundation for Children with Atypical HUS Mission Statement

501c3 Form, Tax Exempt Form, Donation Request Forms, Thank You Notes

 

Optional Materials:  Brochures outlining our mission, about the disease & research & a patient's story.  Pictures of people who suffer from this disease.  Banners, posters, Mailings

 

Example of informational blurb sent along with a request for raffle purchase-two raffle tickets were stapled to the letter.

The Foundation for Children with Atypical HUS

                Hello everyone!  It is that time of year again when we ask for your support in helping The Foundation for Children with Atypical HUS.  We want you to know what a difference your support of our research is making in the lives of children.  Anyone new to St. Joe’s may not know that one of your sixth graders has a little brother, 10, who has suffered from this disease for nine years.

                Our research has uncovered several additional genetic mutations responsible for this life-threatening disease, it has pin-pointed the exact area in the body’s immune system where the mutation is and research and testing has now moved to a permanent location here in the United States.  The University of Iowa has been very generous, and has donated the use of their entire lab.  Our Foundation simply pays for the direct costs of the researchers.   It is a very hands on approach, as all of the parents were able to meet the actual researchers, and were given a tour of the Lab last November.   We know where every dollar is spent.  Our organization is 100% volunteer based. 

There is a promising drug, that the FDA has fast-tracked clinical trials for a promising medication the entire aHUS world is excited about.  It may be a fit for roughly 50% of the patients.  This treatment is so new, we do not know how much, how often or even how long a patient should remain on it.  The FDA clinical trials are in adults and adolescents only.  The children currently receiving it are given it through use of the compassionate clause in the medical community.

One of our families was inspired to operate and fund an interactive site for parents.  This site includes links to the research papers, blogs intended to inform parents, forums which include dialysis, education,  a prayer forum and much, much more!   Check it out at www.atypicalhus.org or visit or informational site at www.atypicalhus50megs.com.

If you could find it in your hearts to support this exciting research, we have included raffle tickets which will be drawn the night of our annual trivia/auction, March 20, 2010.  Please send them through the green folders to the office and we will pick them up.  Again, a heart-felt thanks!

 

Bill and Cheryl Biermann and all of the kids with Atypical HUS

Donation Request Letter

 

       

 

Foundation for Children with Atypical HUS

C/O Bill Biermann

7018 Forest Oak Drive

Barnhart MO  63012 

 

 

 

 

 

On March 20^th, 2010, the Foundation for Children with Atypical HUS will be hold its most important fundraiser.  It is a Trivia night, along with an oral and silent auction.

 

Our organization is in need of items for our silent and oral auctions.    We are requesting a donation from your organization. 

 

Our foundation is a grassroots movement started by a group of dedicated parents and family members of the children affected.  We have a website at www.atypicalhus.50megs.com and share information via this site and we also correspond and keep in touch, offering support for each other via e-mail and the telephone.  There is no overhead as we are a 100% volunteer organization, so any amount goes directly into research funding and makes a huge impact in helping to find better treatments and eventually a cure!  Currently, we are funding two small research studies against this disease.  

 

Our sincere thanks for your support in our battle to win this fight against this horrible illness...our children are fighters and we are fighting this with them!

 

 

 

                                                                     

                                                        Sincerely,

 

                                                        Bill Biermann

 

                                                        Bill Biermann, Director

                                                        Foundation for Children with Atypical HUS  

 

 

Foundation for Children with Atypical HUS

c/o Bill Biermann

7018 Forest Oak Drive

Barnhart MO 63012

 

 

 

 

 

Our Mission

 

The Foundation for Children with Atypical HUS is an organization designed to serve three major purposes. The primary purpose of the organization is raising monies in order to fund medical research. The medical research that will be funded will be those studies that are attempting to find better treatments or a cure for this rare disease that affects mostly children. The Foundation does not intend to do any medical research itself. Instead, it will seek out those organizations that are searching are qualified to do research on this type of disease.

 

A secondary purpose of the organization will be on the development of information and support materials for parents of children who are suffering from this disease. The information will include a website, printed materials about the disease, and well as occasional press release about the disease. Each parent of a child affected will also obtain a colorful packet that describes the disease and a “case” history of ten personal stories about the children, written by the parents, which gives a personal testimony about how the disease has affected their family.

 

Finally, we will increase public awareness by educating our public officials, which will ultimately help obtain public funding for the disease.

 

We are a national organization with a dedicated group of volunteers who work tirelessly to promote the Foundations goals and objectives. While the disease is not common, our group is a formidable group with a very dedicated core group of volunteers who have already made an impact, as evidenced by the funding of over $250,000 in research to date. Our Foundation prides itself because it is comprised entirely of volunteers, a small but dedicated group of parents. Our primary group is comprised of 27 individuals. This group is from a widely dispersed geographic area, with representation from the Western, Midwestern, Southern and Eastern parts of the country. Approximately one third of this group is extremely active.

Our secondary group includes another 30 individuals who have been indirectly affected, but would like to help. A tertiary group includes those who have contributed to a fundraiser or have volunteered in some form. This group has over 600 names.

 

I hope this gives you a better insight into our group, and we welcome any questions. For more information, you may visit <a href="http://www.AtypicaLhus.50megs.com" target="_blank">"">www.AtypicaLhus.50megs.com</a>; or <a href="http://www.AtypicaLhus.org" target="_blank">"">www.AtypicaLhus.org</a>;

 

 

 

Sincerely,

 

 

 

Bill Biermann

Director

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UNDER CONSTRUCTION!!!