Minutes of Meeting May 16, 2024

Members in Attendance: (12):  Jim Leyhane, Roberto Martinez, Charlie Foote, Pat Bailey, Dick Drumm, Murray Forth, Phil Kellerman, Ray Hannah, Andy Leyhane, Peter Brown, Debbie Brown, Carole Healey.

Guests (2): Karen Spinelli, Teresa Martell and Karen Rogers

President Peter Brown called the meeting to order.

Theme for the year:  “Building Community”

Meeting Notes:

Guest speakers: Karen Spinelli, RN and Teresa Martell, RN of the ALS Regional Center

Ray, who organized the presentation, introduced Karen and Teresa.

Karen, who is director of the ALS Regional Center, said that ALS (Amyotrophic Lateral Sclerosis) is a progressive disease with no known cure at this time. The effects are extremity and general weakness; impairment and weakness of swallowing; changes in speech; respiratory insufficiency; drooling; muscle spasticity/cramping/pain; and depression, anxiety and isolation.

The Center provides both a medical and an emotional system of support to help maintain quality of life throughout the course of the disease. All ALS patients eventually succumb to the disease.

Most ALS patients are within the 45-75 age range but the center has treated younger patients. The average life span of a person diagnosed with ALS is 3-5 years.

Eight to ten percent of ALS patients have genetic tendencies but it is relatively unknown how others get it.

The Center operates on an annual budget of around $750,000. It gets a few grants to sustain itself but also relies on fund-raisers.

Club members asked insightful questions which Karen and Teresa responded to. All agreed it was an excellent and interesting presentation. Phil spoke to both after the meeting to indicate he had experience in tube feeding as many of the ALS patients use tube feeding to sustain themselves. He offered his assistance to help in case the center needed tube feeding supplies or other equipment which could be obtained by Mission Central in Mechanicsburg, Pennsylvania.

Scholarship award winners:

Next week, scholarship awards will be given out to three area high school students.

501C4 Status;

Peter reported that Murray and Phil have been communicating with the IRS about our 501C4 status.

Water for Kenya and Global Grant status:

Peter said a Zoom meeting was held with club members involved to review the 18 page proposal by the club for the project. The two hour meeting helped to resolve some issues with the grant and improvements were made to the proposal. One important issue that will need to be resolved is that the club most likely will have to raise above the initial $5,000 – most likely within the $7,000-10,000 range. Peter had spoken to Sue Austin who recommended that the club ask for donations from other clubs to help raise funds.

Roberto complimented Peter on doing a good job on the proposal.

Carole’s Home:

Carole reported that she is conducting monthly internet discussions on “inviting death into the room” and that members were invited to participate. Deb Brown recommended reading the book “Being Mortal.”

Viking Gym and Peace Pole

Jim reported that we are waiting to hear if the town of Schodack wants the peace pole.

Fund raisers including suggestions by Marisa

Peter said that the club needs to schedule fund-raisers for this summer to raise funds for the Kenya water project.  

Board meeting

A board meeting will be held on Monday the 20th at the Browns.

Member inductions

New member indications will be held June 6th. Four new members are expected to be inducted.

Summer meetings:

Pat said she would help to coordinate the schedule of summer events. There will be no meeting on July 4th.

District Meetings:

The District 7190 Celebration will be held on June 19 at 5 pm at Wolf Hollow Brewing.