Fund Raising Tips

[Guest guest]

Howdy Folks,

Several of you have asked about fund raising so I thought I'd address

this to the whole list serve.

As a pastor for the last 12 years, fund raising was and is a common

occurence in my ministry. Mostly it was for missions, 30 hour famine

and creating scholarships to help send kids to camp who had economic

needs. So, I've been doing this for a long time.

Secondly, my network of people starts in my local church and then

branches out to the state. My husband who is like a Jr. Bishop in

our church, has a state web site and he gives our friends periodic

updates on Connor's condition.

So, if I were to put this all into advice on how to go about fund

raising it would be: Drum roll please for here we have yet another

one of 's Top Ten Tips for fund raising for Magic....

1. Choose something you are comfortable doing or have experience

with. For example, in America, who hasn't had a garage sale? Or a

bake sale? Or a raffle? Church suppers are another avenue. Choose

a dinner with low overhead cost and then see if you can't get local

grocers to donate most of the food before hand. Food Lion, Kroger

and Walmart have done this for me in the past.

2. Give yourself time. I laid out a 3 month schedule to put this

fund raiser on. January was administration month (flyers, posters,

tickets, permission from the church, grant money to pay for publicity

and other essentials not covered by donations).

3. Define your network. Family if they live locally. Friends. Faith

communities, the different agencies who help you care for your child

(Early Intervention, Project in the state of Virginia, Social

Services), schools, soroities with an emphasis on service, girl

scouts, boy scouts, youth groups,the Elks, Shriners, Moose and Lions.

All people need is information and one look at your adorable child.

4. Get Help with other volunteers. You can't do these things alone.

The more you delegate, the smoother it should run. I say that

cautiosly because I've delegated in the past and some people have

just been weird, so, delegate cautiously. I have a kitchen crew who

will do the meal. I have a treasurer who will collect and send off

the monies raised by the fund raiser. I have a graphic arts display

person who will help me set up posters and information on the walls

of the Fellowship hall teaching about Silver Syndrome.

5. Publicity - Publicity - Publicity. Oh, did I mention PUBLICITY!

As trying as RSS can be, play up the fact that it's a rare genetic

disorder. That's what piqued the interest of Children's Miracle

Network and Channel 13. Toss out statistics like " Less than 1,ooo

diagnosed cases in America. " Give your state statistic. In Virginia

we have 6 now. I just heard of another family from my GI Doc who is

treating both of our kids for their eating problems. Emphasize every

single problem you encounter. Feeding, FTT, pituitary insufficeny,

hyper ciphosis, asymmetry, scoleosis, normal head size but tiny

bodies, hypoglycemia, the fact that it's hard to get a clear cut

diagnosis if your kids don't have the two classis features (asymmetry

and clinodactyl), hospitalizations, etc!!! Tell them that there is

only one truly expert Doc in the whole U.S. - Dr. H. in New York and

that you have to travel there to get the kind of quality care that

ensures your child's survival. Then, show them your child.

Emphasize that despite their physical limitations their spirits just

soar. Connor brings out the best in everyone around him. It's

simply amazing to me.

To get on the t.v., you need to email one of your news reporter

personalities or the producers. These are the people who set the

agenda for the shows you see. They are usually three months ahead in

programming so plan ahead. So, if someone wanted to get on the Oprah

Show, you need to pique the interst of one of her 6 show producers.

Get it! Or go to the special reporters for the local newspaper.

Radio. Any media form is wonderful. Getting all three is phenomenal!

5. Oooze Smoooze! YOu must be educated on RSS and passionate about

what you are doing. Carry the blue RSS pamphlet with your everywhere

not just for medical purposes but education. Carry pictures of your

child and other RSS kids. Also, get your pronunciations right. If

you look and sound like a doofus you won't impress anybody. If you

are knowledgable and at least pronouncing things correctly, you'll

impress people more with your medical lingo. For example, " -

Silver Syndrome is a form of primordial dwarfism as opposed to

achondroplasia which is a form of skeletal dwarfism. Get it?

6. Don't be afraid to ask and don't be afraid if someone tells

you " No. " No is not a scarey word. It's not even a final word. If

you are turned down for a donation or an advertising spot, just

remember, you have given another human being vital information on

RSS. They may not want to help or can't help, but they know it's out

there. Who knows, may be their child might be born with it and

you've given them information.

7. Contact Salem at Magic. She has all the in's and outs

on fund raising and is very savvy on what you can put in print,

privacy issues, how to word something so that your sponsors can be

higlighted, etc. Also, get the free stuff from Magic, that is I

think you have to be a member. But hey, for only 30 a year you have

unlimited access to ground breaking research, a network of

experienced people on RSS and wonderful networking opportunities with

other families. I traded my lattee for the latest on long term

growth hormone research

8. Clearly state what the money is going for. For example, my fund

raiser is going to The Magic Foundation SGA/RSS Division to help

bring families to convention in Chicago who otherwise wouldn't be

able to come. Or, if you are raising money for the clinic, or Dr.

H.'s research assistant, or convention cost, etc, etc, etc. People

need to know. Also, have the tax exempt id. number handy. As you

know, direct donations to Magic as a non-profit organization are

write offs to the donor's.

9. Contact the civic groups in your area and see if they wouldn't

like a presentation on RSS. You could end up with nice fat check

going to magic for just telling your story and giving the bare bone

facts about SGA/RSS.

10. Take care of yourself. I'm assuming that many of you who are

asking are the primary care takers of your RSS child. That means if

you get overwhelmed with the details, just take a break. That's why

you give yourself time to put it on. Remember, your motivation is

your child, but you still have to have sleep, get adequate nutrition

and some form of relaxation to energize you for another day. What

ever you do, however much you raise, it will be a huge blessing to

you and others. What an accomplishment! Yay Team!!!

Hope this helps. Blessing to you all in your endeavors and blessings

to your gorgeous, talented, precious kids

Kearns

Mother to Graham 7, Cameron 4, Connor IUGR, SGA/RSS periactin & Zantac