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.
Tuesday, September 30, 2008
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
Denise
Saturday, September 27, 2008
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)
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)
Friday, September 26, 2008
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.
Thursday, September 25, 2008
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.
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.
Thursday, September 18, 2008
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.
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.
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.
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