Life can change drastically from one day to the next; Nick Johnson is someone who knows this all too well. At the age of nineteen Nick was diagnosed with a progressive neuromuscular disease called Friedreich’s Ataxia (FA), for which there is currently no available cure. Due to the nature of this disease, his pain is so intense, that it can sometimes take his breath away. A few years ago, the impact of the disease progressed to the point where Nick eventually had to stop working. Nick’s health has been further attacked by a recent spinal cancer diagnosis, and treatment for that has been delayed this summer by a battle with pneumonia.
Nicks Professional Background – In 2006 the Muscular Dystrophy Association (MDA) combined efforts with Friedreich’s Ataxia Research Alliance (FARA) to combat this neuromuscular disease. Nick has served on the MDA’s National Task Force on Public Awareness, their Executive Committee, and on the Board of Directors for FARA. Nick has worked in the mechanical/facility engineering field during the 24 years of his professional career. Nick has also been an active member of the ASHRAE Boston Chapter and is one of our past Presidents (1999 – 2000). Nick and his wife Susan are in a very difficult financial situation and are looking at an estimated cost of $100,000 for medical care. To make matters worse, Susan has been unable to work due to the 24 hour care that Nick requires. As you can imagine, dealing with Friedreich’s Ataxia is difficult enough. But the simultaneous addition of spinal cancer and phenomena has dealt an unexpected and devastating blow to Nick’s fragile body and his family.
When Nick reached out to us asking for help, we decided to set up this fundraiser/ raffle in order to facilitate donations to help with the rising cost of medical care. Nick is a proud man and not the type of person to come right out and ask for financial assistance, which is clear evidence that Nick and Susan are in serious trouble. We hope to raise a significant amount of money from your generous donations to help pay for their immediate living and treatment expenses.
The Raffle
We are selling raffle tickets at $25.00 each or 6 for $100.00 for the following prizes. The drawing for these prizes will occur at the February 10, 2015ASHRAE Meeting. Winners do NOT need to be present for the drawing. If paying by check, please make it out to Nicholas A. Johnson.
- Grand Prize – One week stay (prime week 8/22/15 – 8/29/15, $3,450.00 value) at a 4 bedroom lake front cottage on fully recreational Great Herring pond. This property is a short bike ride to the Cape Cod Canal and comes equipped with a dock, private beach & kayaks. Photos and detailed information can be found at VRBO.com / Listing number 505748. This package also includes a day of golf for four at Pinehills Country Club in Plymouth (with 2 courses to choose from)!
- Second Prize – Tickets to a Patriots and Red Sox game.
- Third Prize – Tickets to a Bruins and Celtics game.
- Fourth Prize – Golf at ASHRAE 2015
- Fifth Prize – $100.00 Gift certificate to Legal Sea Foods
We thank you in advance for your generosity and support. We hope that you will spread the word and share our cause with your friends, family and coworkers.
– Nick and Susan’s Friends and ASHRAE Family
To purchase tickets, contact one of the following:
Darcy Carbone – 617-957-2567 – [email protected]
Teri Shannon – 207-233-1201 – [email protected]
Michael Kjelgaard – 774-444-0250 – [email protected]
Stacie Suh – 781-258-1002 – [email protected]
William Tang – 617-925-8288 – [email protected]
Bill Garvey – 617-345-9885 – [email protected]
