Hope for Linda

For: Linda Salzmann-Kwasniak
Organizer: Lynn Rivers
$7,916
of $20,000 goal.
Raised by 66 donors
39% Complete
This fundraiser is closed. Thank you for your support!

The Story

Hello,

My name is Linda Salzmann-Kwasniak. I am currently on medical leave from Akron Central School District where I have been a Physical Education teacher and coach to the children in elementary, middle and high school for over 25 years. Last year, at the age of 49, I was diagnosed with an incurable disease called ALS (Amyotrophic lateral sclerosis), better known as Lou Gehrig's Disease. This disease killed my mother Patricia in 1999, at age 60, only 2 years after her diagnosis. 

Fourteen years ago, my mother had little promise; however, recent scientific discoveries and advances, such as new treatment strategies and gene therapy, have instilled hope in patients with ALS. I intend to participate in as many medical trials as possible not only to halt the progress of this disease in my life but also, and more importantly, to help find the cure for ALS and help others with this disease.

My friends and family held a fundraising benefit in my honor, the ALS Hope for Linda, on November 10, 2013 to raise the funds needed to support multiple trips to Boston, Massachusetts where cutting-edge medical trials are being offered to try and halt or dramatically slow down this disease process from taking my life in the next 2 years. In addition, funds raised are assisting me in over $20,000.00 worth of home renovations that will be needed to keep me in my home, making it handicap accessible. Between this website and the Nov 10th fundraiser we raised almost 25,000.00. 

We have spent nearly all of the money already on home renovations: an external WC lift to get into the home;  woodflooring throughout the home to replace old carpeting; and convert the bathroom to an ADA walk in shower. In addition these funds have allowed me to travel to Boston 6 times this fall to participate in basic science research studies and miraculously I am being screened to be one of 3 patients to undergo neural stem cell surgery to my spinal cord to try and halt or slow the disease. If chosen I need to live in Boston for at least 5 weeks and the cost to live there will be an additional $4,000.00.

Any support you can provide to assist with these housing costs would be most appreciated.  Any donations you make will be appreciated beyond all measure! I have been a life-long giver and know the joy it has brought me. I hope you can know the same kind of joy, as you help me in my fight against ALS.

Thank You!

Fundraiser Updates

Posted on February 7, 2014

Posted on February 7, 2014

Dear friends you may have received this message already but in case you have not... Linda successfully had 2 million neural embryonic stem cells inserted into her cervical spinal cord on Wednesday February 5th at Massachusetts General Hospital. THIS was our HOPE that Linda would get a chance to have this procedure done for herself along with the many clinical trials that she has donated her time and tissue samples to over the last few months!. It could not have happened without YOUR support along with hundreds of others. Linda will have to stay in Boston for the next month for follow up. Many thanks again Lynn

Posted on January 14, 2014

Posted on January 14, 2014

Dear friends of Linda,
By tomorrow January 15 we should hear for sure if Linda will be one of the 3 patients selected at Massachusetts General to undergo the neural stem surgery on her spinal cord. This would be the one research trial that may indeed help halt or slow down this disease process for her personally.  I will let you know for sure when the surgery is booked and ask for all thoughts and prayers
Lynn Salzmann Rivers 


Posted on November 26, 2013

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

Best Regards

Lynn

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