Jana Thomas Diagnosed with ALS - Help Her Heal

On April 5th, 2022, Jana Thomas was diagnosed with ALS. ALS is a terrifying neurodegenerative disease that gradually causes patients to lose the ability to move, speak, swallow and breathe. There's no cure and often no known cause.

 

In December 2021, Jana slipped on ice while out for a hike and had a severe concussion. After her head injury, she had weakness on her left side, which caused another tough tumble in January, and five more falls during the ensuing few months. We assumed the weakness and falling resulted from the concussion.

 

Sadly, Jana was diagnosed with ALS after many trips to the emergency, two hospital stays, and every test and scan imaginable.

 

Jana grew up in the Lower Mainland and Vancouver and moved to Salt Spring Island in the late nineties. Like many, she was drawn to the island by its natural beauty and strong, tight-knit community.

 

Jana quickly became an active and beloved community member. Her sister Jill and mother Penny followed her magnetic pull to the island. She helped Jill establish the Tree House Cafe, managing it by herself for months with no pay when Jill broke her shoulder during her first year in business.

 

Jana went on to build two of the island's most iconic boutique stores. In 2010, she purchased Stuff 'n' Nonsense in Fulford and learned that curating a store so that it is filled with what people love is her gift and her passion.

She built on this success by creating Twang and Pearl, an islander favorite and beloved visitor destination. Jana knows that being a boss is more than managing people for her own financial success. She's a mentor and friend to her devoted team, who fondly refer to themselves as the Twang Gang. She created a business where being a family is more than a mission statement. The Twang Gang is truly a second family to Jana and each other.

 

Twang and Pearl is a vibrant part of island life, with Jana organizing yearly fashion shows, seasonal celebrations, and more. But beyond this, it is truly a reflection of the beautiful person she is, both on the inside and out.

 

More personally, Jana is a vibrant and kind person who cares deeply about social change. Jana has always had that rare ability to bring diverse groups together for a common cause. She created the first community food co-op on Saltspring, organizing many of the island's farmers, which was no easy task. She worked for several years as an environmentalist on the Great Bear Rainforest campaign.

 

Because of her natural empathy, kindness, and the effort she exerts to maintain her relationships, Jana's circle of love is expansive. It was gut-wrenching to hear her repeat her diagnosis to all those wondering how she was doing the day she was diagnosed. But it was also a fantastic testament to how many people love her. She will never be alone in this.

 

So many friends and family have asked what they can do to help. Your contribution to Jana's Go Fund Me will help her, and her caregivers focus on her healing.

 

ALS has an average life expectancy of 3-5 years, but our goal is to ensure that Jana is in the 10% who live far beyond this. Removing financial stress while we seek out all possible treatment options will afford her the space to focus on her healing. Read below for what Jana will need over the next while.

 

Medical and Alternative Treatments

 

Jana is receiving care at GF Strong in Vancouver, which will soon include daily drug infusions for 10 days each month. She will need support for travel and accommodation expenses.

 

We have sourced excellent providers of companion medical treatments, such as physiotherapy, acupuncture, counseling, and naturopathic consultations, many of which are on a weekly appointment schedule.

 

We are pursuing new drug therapies, some of which have a price tag of between $1,000 and $2,000 per month.

 

Home and Lifestyle Accommodations

 

Jana already needs a cane to walk. Immediately, she will need to make several upgrades to her home to remain safe and accessible.

 

She will eventually need to purchase lifestyle gear and specialized medical equipment that will become necessary for her to continue living in her home.

 

Jana's car is a manual transmission, which is quickly becoming too challenging to use. It will need to be replaced.

 

Eventually, she may need to cover the cost of full-time in-home caregivers.

 

Lost Livelihood

 

Jana is committed to ensuring that her 14 staff members at Twang and Pearl continue to have employment on Salt Spring. The Twang Gang is managing her business during this difficult time. However, Jana will need to hire extra staff support while she cannot work, which will impact her personal income.

 

This is being written to raise funds, but please know that if you're not in a position to provide financial support, your emotional support and love are just as important. This week, Jana told us that she could feel the love in every pore of her being and had never felt so supported. She is surrounded.

 

We also invite you to join us in this journey and keep the love flowing by joining our Facebook Group - Jana's ALS Support Group. https://www.facebook.com/groups/1069330873652876

 

 

XO Jana's Tribe