Avoid Jimmy John's

Just so you all know--- Jimmy John's is unwilling to provide information on ingredients. I am now avoiding them completely (for myself as well, because I think it's bad business practice).

talk soon!!
n

Grant's Wish Fundraiser: March 20

It's cool, we don't have so many followers on our blog :)

However, for anyone out there... this is important. On the outskirts of Chicago, we will be hosting our first attempt at a fundraiser. Grant's Wish is to showcase our wonderful children and the wishes for their future. Grant, and the rest of our children, have a genetic disorder called Galactosemia. We are having this fundraiser to (1) help families afford to go to the bi-annual conference (this year in Minneapolis) and (2) help fund research to hopefully find a cure or manage a way to live a better life even with this disorder.

Every parent has hopes and dreams for their children. Most of us found out this disorder existed when our child was diagnosed. Some people caught it quickly and had less complications, some were not that lucky. We hope that our children can avoid or at least manage the complications that come with Galactosemia.

Please join us on March 20 for our fundraiser (please see details on pgcmidwest.com) or check out the website to see how you can donate. There are also many incredible donations that are already online for our silent auction.

Shop and Share

I posted on our faceBook site as well. i will be sending an email in the next 2 or 3 days with all the info for our Shop and Share fundraiser going on the week before easter. I will also be picking up 300 pre-printed slips next week and so if anyone wants me to send some their way, please give me your address and I will do that. Hoping to raise at least $1000!

More Logo Designs

Ok... I really went too far with the "rough" thing.... I also made one without the blue wrap-around as suggested. They are both more "cleaned up". Alright. Now what do you think?

Well... I think it's done. I liked this image the best. The rough edges and all. Let me know what you think.

Logo?

Hey everyone,

I was messing around with some ideas for a logo. I am not a graphic artist so if anyone can come up with something that looks more professional please do. I will not be offended or discouraged. Here are two color schemes I came up with. I was thinking of a hand as drawn by a child. A helping hand. Inside the hand is a rising sun, the symbol of hope and new beginnings. Let me know what everyone thinks. Any suggestions would be helpful.

Facebook Group

Ok... I caved in and started on Facebook. I created a group for us there. Just look up Parents of Galactosemic Children Midwest. :)

Jewel Shop and Share

Hey all,

I got the info sheet for our Jewel Shop and Share fundraiser in the mail yesterday. We have three sets of dates planned to raise money. The first set of days is April 6-8, 2009. PGC will get 5% of all sales made those days by individuals who hand in and sign our identification slip with their purchase.

Who would like to pass out slips! Obviously I would wait until closer to the sale days to hand out the slips to friends and family, but I figured I could mail all of you a copy of the slip now and you could make as many copies as you want. Does everyone have access to a xerox machine? For those of you who don't I ordered 300 already printed slips but they will not be available until 3/16/3009. What do you think would be the best way to distribute slips to the members of this group?

Also, I got a sample press release format for anyone who would like to advertise this fundraiser in their schools, churches, local newspapers, etc. Let me know if you want that.

AND, the check will be mailed to me, but it will be made out to PGC. I will then send it to PGC with a request for certain monies to be returned to our splinter group. Does that sound ok?

I have never chaired a fundraiser before so any suggestions on how to move forward are welcome!

Research Study

Hi everyone! I hope all is well! Where is everyone anyway? busy busy busy time of the year! I just wanted to let you know Grant participated in Dr. Judy's study this month. At his normal appointment with Dr. Hoganson we took a little extra blood (the same stick---only one time) and overnighted it to Dr. Judy at Emory in Atlanta. If we want research done we are going to have to provide blood and info. to Doctors willilng to do the research. If you want more info on the study or how to be involved please talk to me or I'll give you Dr. Judy's info. Thanks!!! Denise

HI everyone--we are trying to get a fundraising meeting going. Several people can meet this Sat. (Nov. 15) at Nish's place in Lisle. If you would like to be part of the meeting, but can't attend (because you live to far or whatever) let us know by responding to this post. If we don't have enough interest we will make another plan for later. Let us know what you think!

Mabel's Labels

From my email:

Hey all!

My wife's cousin gave me this idea. We could sell items from Mabel's Labels for a fundraiser. It seems very appropriate. I know we could use some of these items ourselves! I particularily like the idea of the paperless option. It allows for everyone to participate from there own "base of operations". I attached their fundraising guide. Let me know what you all think... I'll put this on the blog so everyone can comment.

Nile

This is the website:
http://www.mabel.ca/

A few people asked for the written information we used for fundraising. Here are some examples of what I used at the fall festival when I was selling jewelry. I printed this and put it on the tables with the jewelry so people could read it. Of course I had a huge sign, too. I also have a simple power point I did for the chamber of commerce and Rotary Club last summer when I did a silent auction. e-mail me directly if you want that and I will try to send it to you.

WHAT IS GALACTOSEMIA?
Galactosemia is a rare Genetic disorder affecting about 1/60,000 people. Galactosemia can cause liver/kidney damage, cataracts/blindness, mental retardation, severe learning disabilities, speech issues, tremors and other central nervous system problems. There is NO TREATMENT for Galactosemia other than a restricted diet. Restricting the diet helps with some problems, but does not seem to positively affect several central nervous system issues. Research is needed and EXTREMELY UNDER FUNDED!!!! Galactosemia is considered an ORPHANED DISEASE; meaning there is little funding, government or otherwise. It is up to the parents to raise funds!

Grant Michael Wilburn is a Wilmington resident born in January of 2007. Grant has Classical Galactosemia. Grant is doing well, but research is needed to help him continue to thrive. All proceeds will benefit research, education and support of families dealing with Galactosemia. These donations are NOT for Grant’s direct medical care.

ANNUAL FUNDRAISER IDEAS

Please post any suggestions for our super-duper big annual fundraiser for PGC Midwest here!

facebook group

Hi all,

I was doing a search on facebook for galactosemia groups and I came across a group called "For every 100 members I will donate a $1 to galactosemia research". I think this is the link and I am not sure if you have to be a member on facebook to join, but it is obviously for a good cause. GANES is the group sponsor I believe. Every dollar counts, right!


http://www.facebook.com/profile.php?id=697665983&ref=profile#/group.php?gid=31715744050&ref=mf

basket stuff? UPDATED 10/28/08

Nile and I are open to suggestions for what to include in the gift baskets. We would like to try and get samples of formulas or at least coupons if we can't get samples. Also, a brochure explaining who we are and basic info. I am going to try and get Illinois Nut and Candy to donate some products. They were at the conference and their safe chocolates were sooooo good! I was thinking of including a copy of the cookbook available for download on PGC's website, but a suggestion was made to include our own recipes. So, waddya all think, what else should we include in the basket, and should we create our own book o' recipes? I was also thinking of green and red stickers so parents could label "yes" and "no" foods.


After our MEETING on 10/28/08, it was decided to post basket ideas here. Any informative pamphlets, brochures, etc, should be emailed to all members for "approval" of our name on the materials

Meeting

Hi everyone---We need to have a meeting to discuss some business in the near future. What is your opinion on how to do that? Another conference call? A live chat? In-person meeting?
Please respond and let me know so we can get something set up.
Thanks,
Denise

PGC-Midwest.info

Hello all.
I was on a domain name site (looking for personal use) and saw that they are having a domain name sale.
We can own PGC-MIDWEST.info (not .com or .org) for $.99 for 1 year or $10 for 10 years.
Doing so, we will not have to use the hosting domain name like we do now (idptech in http://gama.ldptech.com)

What do you say?
------
UPDATE: After talking to the domain people
I understood their pricing chart all wrong apparently.

So, it is $.99 for the first year, $5.49 for 2nd yr, $6.99 for 3rd and 4th yrs, $8.19 for 5,6,7,8,9 years and the 10th year we will pay $9.09. In total, in 10 years we will pay $70.50 which at regular price would cost us $109.08

are we still in?

Nish.

I just found out that http://isearch.igive.com/ will donate $.02 to charity for every search.
This is only till the end of this month. It goes back to a penny just like goodsearch.com after that. iGive.com donates a percentage of online purchases as well. Parents of Galactosemic Children is registered with them.

Please use http://isearch.igive.com/ to raise double the money this month. Spread the word!

Nish.

Shop and Share

I have participated in Jewel's Shop and Share fundraisers before for different groups I have been part of and it is really a low hastle, low prep way to make money for our organization. All you have to do is pass out fliers to as many people as possible and then shop at Jewel on the designated days and 5% of all sales will go to your group. Here is the website with more info:

http://www.jewelosco.com/eCommerceWeb/CommunityAction.do?action=getShopAndShare

I would be willing to get the application from Jewel and complete the paper work if/when we decide to use this as another fundraiser. We could use the money to put together those "Welcome Baskets" if we decide to do that as well.

Gift Baskets?

Just an idea that I stole from www.canadianfamilieswithgalactosemia.com. What about gift baskets for new families? I love that idea.