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.

recycling for charities

Hello everyone.
I am getting anxious to start fund raising....
The following website is a great idea. Please take a look at it.

http://recyclingforcharities.com/

Make sure you read http://www.recyclingforcharities.com/Organization-Fundraising-Programs.php

I propose, we do this for 3 months. Keep a tally on this blog to motivate each other. Target- a mininum of $1000 collectively.
What do you all say? Who is in?

Nish.

Website is up and running.....

http://gama.ldptech.com

Every thing about this can be changed, including name.

What we need...
1. Content
2. Placement of content
3. Logo

Nish.

Fundraising this weekend

HI. I have the opportunity to do a little fundraising this weekend. My town is having a fall fest with music on the town square and food, etc. This is the first time for this event and I just found out about it on Sunday. I contacted the people in charge and got a booth to sell jewelry (I make it for fun). After explaining we are trying to get a local group going here and raise some $$$, they let me have a booth for free. I will be crazy busy making jewelry the rest of the week--keep me in your thoughts and prayers. I don't expect to make millions---this is a very small town and the first time this event has happened, so I'm not sure what to expect. However, even a few hundred dollars is better than no dollars. I will post some pictures after the event----maybe it will inspire you to use whatever talents you have as a way to make some $$$ for our cause????
Denise

Website?

Where are we with getting a website up and running?

Vote for a Name

We have discussed a few names. Can we please take a vote. If you have another name to add to the list, please post it to this blog. I will collect the votes on Wed.---October 1. I would like to come up with a brochure and a letter to docs. and dept. of health to let people know we are here. We need a name (and a website) to get that done. So...............here's what we have so far:
Midwest Galactosemia Group
Galactosemia Association of the Midwest (GAM)
Galactosemia Group of the Midwest
PGC-Midwest (still waiting to hear from PGC to see if this is even possible)

Picture from the Zoo trip Sept. 6

baby food

I am going to use this blog to start getting good info from all of you. With Shyla slowly approaching the magic month for solids I am looking for any resources you might have. I plan on making a lot of her food. We did with Kaya. Denise gave me a few suggestions for baby food "cookbooks". Just wondering if anybody else has any good resources. Also, did/does everyone use premade food from either gerber or beechnut. There are some reasonably priced organic brands now. Should I risk it or stick to the familiar ones where the galactose contents have already been tested-even though that data is from 2000. Am I stressing too much too early? Shyla is only 3 months old.

Midwest?

Just wondering which states are we going to consider the midwest. I don't want to step on the feet of the MN group. I guess you can never have too many support groups.

9/17/2008 Conference Call

Cut and pasted from the email:

Midwest Galactosemia Group
9-17-08 Minutes

Members present via conference call: Nina Cummins, Diane Flynn, Gioia/Nile Tallman, Sue Golz, Richard/Anita Rabiega , Nish Rao, Elie/Sheryl Schreiber, Mark/Denise Wilburn, and from Texas to offer insight, Jo Beth Southard.

We spent most of our timing discussing becoming incorporated. Several pros and cons were considered.
Reasons to incorporate
Reasons against incorporation
We need to be incorporated before we can apply to be tax exempt (501)(c)(3)
We aren’t planning to become a 501 (c)(3) right now, so do why add paperwork, cost, etc.
This is the only way to obtain an FEIN # which we will need if we ever want to open a bank account
At this point we aren’t planning to open a bank account, so we could wait
It would give us some creditability, especially when fundraising (having our own name, officers, etc.)
It could be confusing to have a different name then PGC if we ask donors to write checks to PGC (since we would be using PGC’s 501 c3)
It would help us organize ourselves—to be incorporated we must have bylaws, officers, etc. It would make us more official
We could have officers, etc. without becoming incorporated
To the best of our knowledge it will cost about $100 to incorporate and then $25 a year after that---that cost is really minimal, especially if several of us are willing to split the expense
It costs money
We have a few group members who have some experience with incorporation and suggested it is a fairly easy process

Someone from our group is willing and able to file the paperwork


We took a vote. There were 8 group members on the call. 5 voted yes, 3 voted no and 1 stated she will go with the majority. Therefore, we agreed to take the steps necessary to become incorporated. Elie Schreiber volunteered to find out exactly what needs to be done and file the paperwork. He will keep us posted.
We decided not to open a bank account at this time and not to apply for the 501 (c)(3), but we may re-evaluate our need later.
To become incorporated we know we will need a name, officers, and by laws. We discussed different names, but did not come to a conclusion on this matter. We thought about PGC-Midwest or something using the PGC name to minimize confusion when we fundraise. However, we aren’t sure how appropriate this is. Most of us feel we are an arm of PGC and not a complete separate entity, but others were concerned with PGC board members feeling the name is too close and worried about the legal ramifications. Nish is on the PGC board and will look into this matter and let us know. Others had concerns using the words “Galactosemic families or children” because this connotes a label. It was suggested we use something like “with Galactosemia” instead. It was also mentioned that all members are not children, so using “families” instead of “parents of” might be a better fit. We asked members to think about a fitting name and send it to us all through e-mail.

We had 5 group members interested in serving on the board.
President –Denise Wilburn
Vice President- Nile/Gioia Tallman
Secretary- Nina Cummins
Tresurer - Elie Schreiber
Board Member - Sue Golz

We will look at the by-laws other regional groups have and come up with our own.

We discussed getting a website and blog up and running.
Nish/Nile/Sue will work on a website and blog and get back to the rest of us. Nish has a friend that will host a website for free. Nile will set up a simple blog for now and we will improve it as we go.

We did not have time to discuss fundraising at length, but would like to do this in the near future.

Another meeting was not set at this time. We have many things we will work on and will keep in touch via e-mail until the blog is set up.

editing....

It is a bit scary that i can edit everyone's post... Can you all do it too?
Nish.

Where do the fundraising dollars go?

I have to throw this out there to the group... Where does the money go? I have found that all research in the Ross Lab book and the blue book out of Wisconsin is old. I know that PGC funds events such as the big conference, but what can we, as a group, do with the money? One thing that I was trying to research is: what is the machine that actually tests the galactosemia levels in foods? What if we, as a national group, could fund one of those to run tests? Would that be worth money?

Also, PGC raises money for research. What kind of research? One of the doctors at the conference was talking about how all of the neurological "damage" was done pre- and neo-natally. How does this help our children? Is there a place to donate for research for a galactose binder (free vs. bound galactose)- is it even a possibility? Is there a place that researches some sort of treatment or management of galactosemia?

Patrick and I are going to Ireland in October. It so happens that one of the biggest galactosemia research hospitals in the world is in Dublin. I am working with my sister and brother-in-law to get an appointment with a doctor or nurse there to find out about their research.

What is in a name?

I am partial to Galactosemia Group Midwest. What do others think?

-Nile

Up and Running...

I just used the basic outline to create this blog. Everything can be changed as we make decisions such as the group name. Even the website name can be changed. Hopefully this will give us a place to put everything together. Feel free to post any threads and make comments.