September 2010 Chapter Meeting Minutes

Families of SMA – OKI Chapter
Meeting Minutes
Sept 14, 2010

Attending: Kevin Lockwood, Beth Lockwood, Rosemary Hilston, Elizabeth Lockwood, Susan Wenker, Kristen Smith, Nicole Haake and Kenneth Hobby (By Phone)

Update from National

Kenneth called in and spoke via speaker phone to those in attendance.
Accounts – the OKI account is now maintained at the National office. Funds raised are sent to them for deposit and record keeping. We have two credit cards at the OKI Chapter for our immediate needs. From January to August 2010 the Chapter raised $115,559.05 with the OKI Walk and Roll, Kentucky Walk and Roll, Golf Tournament, Flying Pig Marathon sponsorship and other events and donations. Nicole requested that account balances be sent out more frequently also comparison data is needed for the larger fund raisers like the Walk and Roll. It is useful to compare from year to year the changes in not only walkers but in funds raised online, walk day and through corporate sponsors. National will need to supply this as the records are now with them.
The actual funding and expenses for 2009 was presented and also the need to look at investing in our fundraising in order to yield higher revenues.
2010 Progress – Kenneth gave an update on the research currently underway. At the moment we have 9 new therapeutic programs, a great increase to the 1 we had in 2000 and 6 in 2005. However, we need to continue to add as new research to find new drugs as many we are looking in to right now will fail. It is a long process and the funnel must be kept filled to give the best possibilities of success. Also National are focusing on how to improve the here and now for SMA families. A nutrition booklet is being written and other ways to support.
SMA Conference 2011 – will be held in Orlando. There are already 210 families registered.

Chapter Business
Nicole will be implementing a new email system to streamline the newsletters and announcements to OKI Members. A service called Constant Contact allows users to create custom emails and lists, members will see this soon.
MJ Purk has developed and will support an OKI Blog http://okifsma.blogspot.com/. We also have a Chapter website at www.fsma.org/FSMACommunity/Chapters/OKI/ and we have an OKI Chapter Facebook page filled with Chapter photos and friends. These are all great ways to find out about our great chapter.
A donation was received from a couple who had a large amount of change in their house getting in the way. They said if we wanted to get it out of their way we could have it. Kevin took it to the bank and it was around $3000.00!

Upcoming Events

Garage Sale – will be held October 1st and 2nd to raise funds to support the Walk and Roll raffle. For more information check out the OKI Blog.
Fundraiser for Camp for Courageous Kids – First Watch in Hyde Park will be will be providing dinner on October 6th to raise funds to support the weekend our SMA kids go to camp. There will be two sittings. 5.30pm and 6.30 pm. Tickets are $10.00 per person and available from Rosemary Hilston.
Halloween Skating Party – to be held October 24th at Skatetown USA in West Chester. This has always been a great event, the rink closes to the public for the first hour so the power chairs can get out and skate to the music. Pizza and friendship included and costumes highly suggested.
OKI Walk and Roll 2011 – save the date of April 30th!
The next Chapter Meeting will be in November.

Submitted
Nicole Haake
OKI Secretary.

SMA Garage Sale

Hello Everyone,

Although the 2011 Walk 'n Roll seems like it's a long way off, we are already doing some planning for the Raffle. Every year, companies tighten their purse strings and it is becoming increasingly more difficult to elicit donations. So---we're going to attempt to fund additional raffle prizes through a garage sale. We did this on a small scale last year, and even in its limited scope, it was quite successful. By expanding our efforts we may be able to supplement donation prizes for several years at a time.
We're hoping that you may want to do some fall "de-cluttering" and donate items. We're looking for used treasures in good shape - those you wouldn't hesitate to buy yourself. Toys are always big sellers. Other things such as household goods, tools, decorative items, and sporting goods sell well, too. All furniture, except upholstered pieces, would be welcome. Unfortunately, due to space constraints, we won't be able to take clothing or bedding. Remember that the ugly statue Aunt Bertha gave you for Christmas may be just the thing to grace some one else's mantle. And you won't feel guilty unloading-er-donating it because it's going to a great cause!
The sale will be held on October 1st & 2nd at 1705 Fox Tail Chase Drive, New Richmond, Ohio (Marilyn's house). You may contact Marilyn Pater (payday11@aol.com) or Gloria Logeman (Mlogeman@aol.com) for drop off information or directions. Donations will be accepted from 9-24 to 9-28. We'll need time after that to organize and price all those priceless treasures.
Feel free to bring friends and family and shop 'til you drop!

Thanks in advance,
Marilyn and Gloria