Posted on November 26, 2013
Dear Family, Friends and Supporters of Linda Kwasniak,
It has been 2 weeks since the November 10th Fundraiser and Linda and I and our sister Laura are still in humble amazement of ALL of the support and love that has come our way in the last 6 weeks which culminated in a wonderful afternoon on Sunday November 10th where we enjoyed seeing 270 adults and 70 children during the 3 hour benefit. The children were mostly from the Akron Central School District coming to see their beloved gym teacher!
I am thrilled to share with you that between the incredibly generous donations made here on the website, ticket sales for the benefit and the money raised on the day of the event...that we have deposited over $20,000.00 in the dedicated Hope For Linda checking account!
There are so many people to thank and I will overlook someone but let me start with the key friends who joined Laura and I on the planning and implementation team for the benefit:
Honorary sisters Mary Horton and Patty Seres who were the nucleus of the planning from the moment we decided to pursue a fundraiser.
The Horton and Seres/Jackson families who worked tirelessly for weeks to seek donations, sell tickets and then setup and clean up for the benefit
Bobby McPartlan for his last minute help in donating his banquet hall AND his personal time during the event to assist in catering the food
Kailey Seres for helping set up the fundraising website and helping to make the tickets
Thomas Mileham (brother to Mary Horton) for the donation of his catering expertise
Rob Westmiller (Linda’s other ½ of the Akron Elementary Phys Ed team) for taking lead on securing over 120 baskets from the teachers, classrooms and parents of the Akron Central School District. Rob also brought a team of volunteers to the benefit to run 50/50 raffles
Lori Baumler for assisting Rob in the basket donations and instrumental in the success of the basket raffle and tireless in her efforts to providing resources to assist Linda in in this journey
Jeanne Drier for her commitment to helping with the basket raffle.
Rob Plewik and sister Lauren who gave up 4 hours in the middle of the night on Saturday night for basket raffle set up AND then Rob who spent 6 hours working diligently to assure that the Bill’s Game was playing as promised during the benefit!
And a final thank you to ALL the volunteers who were friends of friends and family who helped make the benefit such a success.
We’d like to share some of our initial uses of the funds raised.
Sheridan Surgical has installed an electric wheelchair lift outside the house to allow Linda easy access to the front entrance for ~ $6,000.00. Of note money from the Akron school scout troop 30620 and ALS Guardians Angels organization contributed to the Lift. A picture of Linda using the Lift is posted!
Other home renovations such as converting from carpeting to hardwood floors and redesigning the bathroom are in progress.
Linda has travelled to Boston 5 times in the last several months and we return to Boston on December 12-13. She has volunteered to participate thus far in 4 research trials mostly for the future hope and research for a cure:
1) National ALS Biorepository : a study looking to find the best ways to collect and store tissue and fluid samples from patients with ALS for current and future research in ALS
2) Massachusetts General Skin biopsy study: Linda is donating skin tissue, blood and cerebral spinal fluid for basic science research at Massachusetts General
3) Massachusetts General clinical medication trial of Fingolimod (Gilenya) which was a 30 day trial of this medication to see if it was safe for people with ALS to take.
4) Massachusetts General : a study called the Longitudinal Characterization of the FTD-ALS spectrum which is trying to study the differences between ALS and Fronto-temporal Degeneration (FTD) in order to find out different tests and procedures
We are heading to Boston on December 12th to continue with the skin biopsy test and then meet with Dr. Merit Cudkowicz (our 1981 Amherst alumni and friend) to discuss further treatment options for Linda.
Again our heartfelt thanks for all your love and support. Please keep Linda in your thoughts and prayers in the days ahead