Minutes – August 4, 2016

Organ Transplant Recipients of SWFL Inc.
Meeting Minutes

August 4, 2016

Opening

The monthly meeting of the Organ Transplant Recipients of SWFL Inc. was called to order at 11:35 a.m. on August 4, 2016 at The Sanctuary located at 8960 Colonial Center Drive in Ft. Myers by Shamie Kelly, President of the group.

Announcements

• Anniversaries: Robin Furney-Kidney (8/5)
• Visitors: No visitors were present at this month’s meeting.
• Member Updates: Carolyn Moore is doing well she has just been too busy to attend the last few meetings.

Reports

The Secretary’s report was approved and meeting minutes are available to view on the website. The Treasurers report shows a previous balance of $936.05 with contributions of $44.00 from the monthly 50/50 and membership dues collected totaling $25.00 resulting in $69.00 in deposits. $59.95 was paid to Steve Williamson for last month’s meetings food and $43.00 was paid to Shamie Kelly for the organizations P.O. Box rental leaving an ending balance of $902.10 Donna Williamson reports that there were no contributions nor any payouts from the Fletcher Fund last month.

Old Business

Shamie Kelly, President of the group, wanted the group to know that we have had to refund the day of basketball with Shaquille O’Neal to the winning bidders from the Night for Life event. There have been complications with trying to schedule a day for it to take place so the group refunded the money to the buyer. We will still have the certificate so it may be used for a future fundraiser. Carlene Brennen proposed we hold a fundraiser at our Christmas party. She has been collecting some really neat holiday items and would like to hold a Chinese auction at the party which will be at no cost to the group because she is offering to provide all of the items to be put up for auction.

The items vary from gifts that can be given to others and items members may want for themselves. Donna Williamson made the motion to allow Carlene to proceed with her project with much gratitude from the group for her generosity. Jenniene Moran as well as David Weinstein seconded it and the group unanimously approved the motion. Carlene will provide a detailed proposal of the event and where she would like the funds designated to the Fletcher Fund or the group at next month’s meeting. This year Night for Life is celebrating a decade so Donna Williamson hopes the group all shares in her enthusiasm to make this year’s event even bigger and better than ever.

She would like to see the event focus on donors this year and have living donors and donor families as speakers so she is encouraging everyone in the group who has had a living donor transplant or those who are in touch with their deceased donor families to invite them to come to the event even if they do not wish to speak. Donna states that many of the people who attend typically know a recipient but many are still scared of donation so with focusing on donors they will be able to see for themselves that living donors still have normal lives after donating and they can meet families who chose to donate their loved ones organs which can put their minds at ease as well.

She feels that donors should not be paying for their ticket to the event and hopes that the recipient would cover that for them but if finances are an issue then contact Donna or someone else with the Fletcher Fund to discuss getting a grant to ensure the donors get in at no charge. All of the donors have been thanked for Night for Life and a big thanks to everyone who helped out with the event, the group as a whole feels that it was a great success. There will be a wrap-up meeting held immediately following today’s meeting. Give Life Day was on July 16th at the Edison Mall. While Be the Match bone marrow registry did not show up, Lee Memorial was there with the blood mobile, representatives from our support group were there as well as volunteers from LifeLink to register organ donors. 3 people registered at the table, 6 people donated blood, and we spoke to approximately 70 people regarding organ and tissue donation. Edison Mall was thrilled with our participation and Shamie is already discussing with their PR representative another event to be held in April during Donate Life month which will be hosted by us rather than LifeLink. They are looking to make this more of a “health fair” type of event and it will be held near Macy’s with a stage for recipients and donors to speak. Ideally she would like to find some sponsors along with One Blood and maybe a doctor’s office to send a couple of people out to represent them.

We will discuss the event further at the November meeting when it will be about time to begin planning for it. There are new business cards and flyers for the group, please make sure to take some before you leave the meeting today to distribute them. Staples made a mistake on the order by so printing them off center so they were free. Shamie also got a new banner a poster which the poster was also printed wrong so it was free as well. We need more pamphlets for the group and Shamie asked for a member of the group to volunteer to help with the design. Shamie talked to Bob Lucas about adding Café Press to our group’s website and he said that it would not be a problem to add the link on our page which will act as another source of revenue for the group. There are all kinds of items that can be ordered through Café Press so this could be a really great way to not only advertise the group but to also raise more money for our monthly expenses. An email with the color selections for the regular group shirts will be sent out and shirts must be paid for before they can be ordered. Shamie is also looking into some other companies to order shirts from in the future to try and find a more competitive rate. The expected cost is about $10-11 per shirt and they will be short sleeved. Be prepared to pay for your shirt at the September meeting, cash only please.

New Business

Shamie Kelly, President of the group, spoke with a member of the Gulf Coast Transplant Center who informed her that they now have their second transplant surgeon and they expect the second nephrologist to be there by mid-September and there is an interim director from a consulting firm in place. The new social worker will start in early September about the same time as the nephrologist. With UNOS overseeing the process and everything looking like it is finally on track they expect to re-open the deceased transplant program in early October. Next month the group plans to hold its first night meeting. The transplant center is trying to help and they are possibly going to let us hold the meeting in the community room at Gulf Coast. The person that needs to approve this will be out of the office until Monday the 8th so the transplant center will get back to Shamie to confirm sometime next week. It will still be held on the first Thursday of the month with the anticipated time to be from 5:30-7:30 p.m. The transplant center is very interested in working with us and would really like to send a team to represent them at our next meeting so that they can give us any updates on the program and give members a chance to ask questions. As soon as Shamie hears who will be coming from the transplant team she will send out an email to the group with the update. Although they will continue to only do kidney transplants at Gulf Coast it is still good to have a transplant team directly working with the group. A second place to hold the meeting was proposed by Carlene Brennen which was to hold the meeting in the cafeteria if the community room is not available for our next meeting. Donna Williamson seconded the motion so it was decided that if the meeting could not be held at the community room everyone would meet in the cafeteria. Everyone please remember to silence your cell phones before entering the room for the meeting. It is understood that they need to be on, especially for those waiting for a transplant, but just be mindful to keep them on vibrate or silent mode when in the meetings. All members please make sure to register on the website. That is how you can ensure that you receive all of the updates and announcements that are sent out via email. Paul Lewis also mentioned Comedy for a Cause again as a way for the group to host a fundraiser. There is a Financial Workshop for Transplant Patients hosted by the LifeLink Legacy Fund being held at Tampa General on Friday, August 12th. Flyers have been handed out to members detailing the event and RSVP’s are required by tomorrow August 5th. This is for pre and post transplant patients and lunch will be provided. They are going to try to stream it live and have it on their Facebook page but it is unknown if that will definitely happen. Paul Lewis gathered information on the Comedy for a Cause fundraising option that has been brought up at several past meetings. There is an initial investment of $600 which basically rents the place for the evening and we are responsible for selling tickets at cost of $15 each. 100% of the ticket costs come back to the group which means at least 40 tickets need to be sold in order to break even. Paul is unsure of the capacity at this time but will find out for the next meeting. Shamie thinks this could be a possibility and we could look into getting a sponsor such as Lee Memorial to cover the $600 since they did not make their usual donation to the Night for Life event and they could also use the event to gather good publicity for the reopening of their transplant center. With Lee Memorial sponsoring the event we also could expand our ticket sales to their employees which would bring a larger crowd than just our group alone. The concern over the type of talent they will have available was brought up and Shamie said that would be something to be looked into and discussed at next month’s meeting.

Adjournment

Meeting was adjourned at 1:30 pm by President Shamie Kelly. The next meeting will be at 11:30 am on September 1, 2016, at The Sanctuary located at 8960 Colonial Center Drive in Ft. Myers.
Minutes submitted by: Melissa Tuff, Secretary

Minutes – July 7, 2016

Organ Transplant Recipients of SWFL Inc.
Meeting Minutes
July 7, 2016

Opening

The monthly meeting of the Organ Transplant Recipients of SWFL Inc. was called to order at 11:45 a.m. on July 7, 2016 at The Sanctuary located at 8960 Colonial Center Drive in Ft. Myers by Shamie Kelly, President of the group.

Announcements
•    Anniversaries: Frank Tutay-1st Kidney (7/79), Paul Lewis-Pancreas (7/1/12), Kathleen O’Toole-Lung (7/16/09), James E. Johnson-Kidney (7/17/10), Mariann Jefferson-Liver & Bone Marrow (7/20/97), Madelyn Chrone-Heart (7/30/00)

•    Visitors: Steve Cavaleri, who is in the process of working with the V.A. to get listed through Tampa General for a liver. George Fry a heart transplant recipient post massive heart attack. His transplant took place at Tampa General on 6/2/05 and he recently had his first annual transplant follow up in which his biopsy showed absolutely no signs of rejection. Rhonda who is originally from Chicago is with us for the first time today as well. She moved here to get on the list for a kidney and she has been listed at Tampa General for the last 2 years. Two weeks ago she got a phone call for a match but it was a no-go. She is hopeful that she will get another call very soon. Jean & Alissa Watlington are here for their first time, Alissa found out about the group after Googling support groups for transplant patients in the area on behalf of her mother Jean who is a liver recipient. Jean received her liver at Tampa General on May 13th 2015 so she just celebrated her 1 year transplantiversary!

•    Member Updates: Secretary of the group Melissa Tuff shared the good news that she was just approved for the waitlist at Tampa General for her second kidney. Member Donna Williamson reported that John Hall has suffered some setbacks in his recovery unrelated to his transplant. John had a hip replacement and has been having problems with it so he is being treated up north near their summer home. Shamie Kelly reminded the members of the group that if they have updates on members that are not able to attend to share this with the group so that we can send them a card wishing them a speedy recovery. At this time existing members went around the room to do a brief introduction since there are so many visitors and potential new members in attendance.

Reports

The Secretary’s report was approved and meeting minutes are available to view on the website. The Treasurers report shows a previous balance of $566.75 with contributions of $53.00 from the monthly 50/50, membership dues collected totaling $10.00, $72.00 from the Pitch for Life Baseball Fundraiser, and $300.00 from the Fletcher Fund to cover 50% of the website costs resulting in $435.00 in deposits. $65.70 was paid to Shamie Kelly for last month’s meetings food leaving an ending balance of $936.05 Donna Williamson does not have the latest financial report for the Fletcher Fund but announced that they paid out a grant for $1000.00 to a member in need last month.

New Business

Shamie Kelly, President of the group, met with members of the Gulf Coast Transplant Center to discuss the restructuring of the transplant program. Barbara Miller has resigned/retired from the position of Renal Transplant System Director for Lee Memorial Health System and the social worker Janet Milan who visited the group a few months ago has been replaced due to UNOS requiring a licensed social worker in that position. She has been relocated within the Lee Memorial Health System and it is unknown if she will return to the transplant team. Janet also held a position on the Fletcher Fund board so at this time it is not known if she will continue to serve on the board. In addition, the transplant nephrologist who was scheduled to join the team has experienced some family issues that are prevented him from taking the position so now another nephrologist is coming on board. Shamie would like to remind members not to bombard the transplant center with emails or visits during this time of restructuring. They have assured her they will give us more information by attending or holding a meeting for the group closer to the center reopening, possibly around Christmas.

Shamie also met with Dr. Delans from Associates in Nephrology who were previously affiliated with Gulf Coast Transplant Center as they are negotiating with Tampa General to provide follow-up care to their transplant patients. This will also go for Surgical Specialists who were previously involved with the Gulf Coast Transplant Center. Further clarification should be available next month as Shamie will be meeting with them again today. Give Life Day is Saturday July 16th at Edison Mall from 2-5pm. LifeLink will have a table set up to register organ donors, Be The Match Bone Marrow Registry will be there recruiting bone marrow donors, and One Blood or Lee Memorial will be there to accept blood donations and possibly do blood pressure checks.

Shamie proposed the idea and LifeLink sort of ran with it but she would like our group to have a table there since most of the people volunteering for LifeLink are group members as well but it is also a great opportunity to get the word out about the support group. A sign-up sheet will be passed around for those interested in volunteering for the event. Apple has released a new version of their operating system that allows people to register as an organ donor at the push of a button. Make sure to share this will all those you know who use iPhones.

Old Business

Jenniene Moran was not able to attend today so a Night for Life wrap up meeting is scheduled for immediately following our monthly August meeting. Even if you weren’t involved this year feel free to attend so that we can start brainstorming for our Night for Life X! If you were personally involved in gathering donations please be sure to thank the person or organization that contributed by email, phone, a short note, or even a visit. Doing so will help to ensure we can count on their support for future events.

The formal Thank You that was supposed to have been printed in the News Press was never printed although it was submitted four different times so we will continue to thank our donors via the website and Facebook. Name tags are being ordered and will hopefully be in before the Give Life Day event, they are expected to be $8.00 each. Shamie is continuing to work with the management of Sonny’s BBQ to coordinate our Random Acts of BBQ date. She expects this to be late August or early September and the group prefers to do a weekend versus a weekday but we will also work with whatever they are willing to give us.

Quarterly night meetings have been proposed and September is the tentative start date for this to occur pending further discussion at our next meeting. Donna Williamson made the motion to add Café Press to the OrganSupport.com website as a way to raise more money for the group. Café Press offers shirts, coffee mugs, and various other customizable items for sale with a portion of the proceeds coming back to the group it benefits. Mariann Jefferson seconded the motion and a group vote was also taken in which no one opposed the motion. Paul Lewis also mentioned Comedy for a Cause again as a way for the group to host a fundraiser. He will gather information and it can be discussed more in depth at the next meeting.

Adjournment

Meeting was adjourned at 1:30 pm by President Shamie Kelly. The next meeting will be at 11:30 am on August 4, 2016, at The Sanctuary located at 8960 Colonial Center Drive in Ft. Myers.
Minutes submitted by:    Melissa Tuff, Secretary