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.