Awareness/fundraising

[Kerri Grey]

Hi, I have been thinking about whether i should try and do some awareness/fundraising into ahus in Australia as there is nothing. No one has ever heard of it and even the people diagnosed with it have a hard time trying to understand it. I have never done anything like his and do not have any idea what sort of thing i should do or where to start, does anyone have any ideas that could help me.

[Linda Burke]

Phyllis, Cheryl, and Heather seem to have a common thread in their replies- and bless their hearts, they've done a world of good with their fundraising efforts. A good first step might be to look about and see what friends/relatives have for special talents or resources, asking for their help as a springboard to guide your thoughts. Phyllis' area has a beautiful venue for the 'Hike for Hyde', and was a nice inspiration for this very special event. Heather's community has been supportive of Ryan's Hope, their aHUS blockbuster annual golf fundraiser. The Biermann's Trivia Nights seem a blast for one and all, too. All three events make community support fun for the participants - a surefire way to draw people in. What is a special feature of your area that parents and children can join in for an few hours of family fun? (Example: Living in Australia, are you on the ocean with a few friends who have boats, or friend/relative with a marina connection? You could do a fishing tournament, sandcastle contest, etc. Have a friend with a restaurant? ....try a 'best appetizer' contest. You get the idea - utilize your connections to help build your fundraiser.)
Lisa's daughter Chloe is the adorable spokesperson for their area's regional blood bank, and her sweet face is on their mobile blood donation unit. What a wonderful win-win cause - boosting interest in blood donations helps the entire community and also raises aHUS awareness.
We'll be looking forward to hearing you weigh possibilities.... best wishes!

[Heather Still]

Our first event was more family oriented like the one Phyllis does. We had a dunk tank, volleyball, and horseshoes set up. We sold hamburgers and hot dogs and did a silent auction. The auction was donated baskets. Some baskets were huge and some were small. People just walked around and wrote down a bid on the baskets. I set a minimum starting bid on each basket based on the value of the basket. Some basket examples were a "Basket of Cheer" - bottles of wine or liquor. "Movie Night" - gift certificate for DVD rentals, some popcorn, chocolate, and soda. "Shopping Day" - gift certificates to local stores.....Etc..... I'll see if I can find a sample copy of an auction bid sheet to email you. Our auction made about $5000 at our first event. And I will say that collecting donations is the hardest part of any fundraiser you do. You will be surprised at the generosity of the people in your community - even not knowing what the illness is they still give.

[Kerri Grey]

Cheryl, sorry for my ignorance i cant seem to find where i have to go to find your friend request, i tried going into my page but cant find anything there. Can you please point me in the right direction.

[Kerri Grey]

Hi Phyllis, that sounds great, it sounds just like the type of thing i want to do. I will def have a look at your web site

[Cheryl Biermann]

Kerry, I'm not sure if we're friends, so please respond yes to my friend request, also, for some reason my email only works sending out if I've already received an email from that person, (don't ask me why?!) So please email me a reminder to gather this stuff to [e-mail], no I don't raise bulldogs and I hope I don't look or act like one, but my husband has this wierd sense of humor!

[Phyllis Ann Talbot]

Kerri - Heather mentioned below we did a 'Hike for Hyde' that is really a pretty loose term - we had a pretty park close to us and we had folks register - and for their registration they got a t-shirt, a raffle ticket, and then the kids got a ton of activities - coloring stations, face painting, bounce house, etc. Really was a fun time but was alot of work - luckily we live in the town I grew up in so we were blessed with a ton of slaves - oh meant family and friends ;-) that helped us put it together. You'd be surprised with how much folks care - especially when you are talking about a sick kid - and these kids are all so darn CUTE! Anyway - the webpage for our site is www.hike4hyde.com if you want to take a peak at how we set it up - feel free to e-mail if I can help in any way as well!

[Kerri Grey]

Thanks to all for your advice. Cheryl it would be great if you could email me that stuff. my address is [e-mail]. I would love to do a family orientated fun day out but i am concerned that because not many people have or know about ahus that people wont care too much about it and then it would be a matter of working out how to get the fundraising out if that. I have spoken to another mother from the childrens hosp here whose daughter has ahus and she is keen to help me out and organise something but she too has no idea where to start. I am really passionate about doing something i think it will probably take a while to organise cause i havent done it before but hopefully i can work something out and it will go well.

[lisa ann peterson]

we in our hospital have done pennies for kidneys and put a jar out and put candy next to it and when the staff gets candy they put money into the jar its simple and its a start we used the money to buy supplies for kidney kids in our hospital because its not cheap to have a kidney disease.. i do alot of blood drives..

[Cheryl Biermann]

I know my previous response was so long, sorry! Believe it or not, I did forget something though, you asked about educational things...we had pamphlets printed out, they included a picture of our very cute baby, Nathan, (insert your own pic), his story, (insert your story), and a very basic explanation of the disease...we could also get a copy of that to you if you'd like...again sorry for the rambling, I tend to be detail oriented!

[Cheryl Biermann]

Hi Kerry, We are so excited you feel up to this! Please know too, that our first fund-raising trivia was the brain child of Bill's VERY energetic, VERY out-going sister, Helen. Her son's high school provided the gym we held it in but she put the whole thing together with just a little help from Bill for auction items! So utilize the loved ones in your life who feel helpless but want to do something! From the first year, both our families jumped in and it has just been an amazing experience for all involved...just like Heather said, start talking to people, later on, when there were conflicts with events, trying to find a place to hold it became an issue, and our brother-in-law, one of St. Louis's finest,(a police man), came up with the Carpenter's Hall, a BEAUTIFUL, VERY Large hall he provided security for in his off-duty hours...so far they haven't charged us a dime! Thoughts for fund-raisers that don't require a lot of effort would be a raffle, (you only need a few couple of nice prizes & people to sell them), some people work for organizations that will match a donation to an employee's charitable contributions, or some smaller amount, Heather's wonderful mother-in-law just told people about her beloved grandson, and donations poured in! I still get teary when I think of the wonderful people out there! Then there are bowling nights, trivias, golf and tennis tournaments, biking, hiking & runs even bake sales! My son's elementary school does a Crazy Hair Day/Holloween Dress Up & Pop Corn Friday at 50 cents a pop it's very affordable!...our other son's elementary school sells raffle tickets through their weekly folders. Our son's high school requires 100 hours of volunteer hours, to graduate, so they have been providing labor for the trivia nights! In addition to this, I can e-mail you a copy of the donation request letters we use to ask businesses for donations, and the letter that is attached to the raffle tickets that explains a little of the foundation's work. We also have tax-exempt forms for purchasing items related to the events and I'm sure Heather, Phyllis and Linda have their own versions as well. We would all be willing to help you out with your own version, according to the laws in your area, (tax-exempt stuff I mean). If things get busy with you, pick someone who is out-going, organized, ect. or a couple of someones, and trust them! But do keep in touch with them so they have a personal validation for all their efforts! Let us know how we can support your efforts!