Tuesday, May 17, 2011

Message from Betty after the Fundraiser

Many thanks to family for the efforts of family and friends for putting this together and to all of you who made the effort to attend. Earl and I dreamed of spending many wonderful years of happiness here on the 'best coast ', but it was not to be. We were doing really well until January 24th 2010. I remember that date because we were on our way home from taking my long lost brother to the airport on his way back to England. Earl noticed that I had slowed and slurred speech, I knew what it was, but fought the diagnosis tooth and nail. How could this be happening to me, why now? The same thing happened to my mother; retirement and then the horrible diagnosis. I want this to be more than about me, I want it to raise awareness of this devastating disease. I want everyone to go to YouTube and search for Sarah's story.  That is my story. I was feeling on top of the world and I was looking forward to a great new life.
Thank you to all who were involved in the organization of this event and thank you again to all who took his time to attend. Your kindness will not be forgotten.
Thank you also to all the people who made donations to the silent auction.

Fundraiser Report

The For Betty Fundraiser at the Iron Duke on Wellington was a great success! It was a true demonstration of the spirit of community.
The silent auction raised $2680 (over 50% of the estimated value of the donations) An additional $230 was received in direct donations. Each of the 49 items was bid on and sold. Quite remarkable. Additional donations through the fundraiser blog will raise the final total to over $3,000.
All of this will go directly to support Betty and Earl or to fund an ALS research project they endorse.

Sunday, May 1, 2011

Fundraiser at the Iron Duke on Wellington

 A fundraiser event will be held on Sunday May 15, 2011 from 2:00 to 4:30 p.m. at

     The Iron Duke on Wellington
     207 Wellington Street, Kingston

The event will feature jazz music by Rubbaboo and Guests, a silent auction of art work and donations provided by local businesses. Appetizers will be served.

Update on Betty

Betty's ALS symptoms have continued to worsen though not at the pace that was originally feared. She has lost most movement in her arms, hands and legs and her difficulty in swallowing and speaking has increased. She requires constant care during Earl's long daily absences for work. On April 29 she had an operation to insert a feeding tube that will facilitate feeding and administration of medication going forward. A portion of the care required is funded by the BC Ministry of Health. Generous donations from friends and family have helped support the balance of the cost. Betty continues to keep in touch with family and friends using Skype and Facebook.

December 19, 2010 Sporty Snowmen Give Gift of Communication

 Donations to the For Betty Fund were given in lieu of Christmas gifts by a number of members of Betty’s family.  Donors received a Sporty Snowman decoration and gift card to pass on to an individual indicating that such a donation had been made on their behalf. The effort raised $2152.00, more than enough to cover the cost of a Head Mouse Extreme and Keystrokes package. This combination of technology enables Betty to communicate using the movement of her head in place of her hands to construct messages and access the Web. The software also allows her to "speak" messages she composes, which is a big help in communicating with those around her.

October 31, 2010 5678 Dance Studio Helps Fight ALS

From SNAP Kingston.com
On Halloween day, a special show and party was held to raise funds to help friend Betty Fisher fight her recent diagnosis of ALS. The afternoon began with an exciting dance performance including the studio’s best pieces, which included dancers, teachers, families and friends of 5678 Dance Studio. After the show, guests had a hauntingly good time at their Halloween party. The evening raised $2175 to help assist Betty Fisher (Jenkins) with the costs associated with living with ALS.
From  EMC Kingston

Posted Nov 4, 2010 By Kristyn Wallace
EMC News - Betty Jenkins couldn't be in Kingston last weekend to attend the dance recital held in her honour. But the former Limestone City resident, who now lives on Bowen Island in British Columbia, was in the hearts and minds of members of 5678 Dance...
read more

Friday, October 22, 2010

Background about Betty's ALS

Early in 2010 Betty started to notice the first signs of her illness. During the first months of the year, she had several falls and experienced changes in her voice and motor control. By spring, the symptoms has become more noticeable. Her balance was affected and she experienced increasing difficulty moving around and speaking.

The timing of the onset of ALS was very unfortunate. She and Earl had just realized their long-held dream of selling their house in Kingston and building a new home on Bowen Island, BC.  Betty and Earl had only had a few months in their beautiful new house before their attention had to be turned, almost exclusively, to Betty's rapidly deteriorating health.

After a long process of elimination of other potential causes of her symptoms, Betty and Earl were finally given a firm diagnosis in July. The ALS specialists had originally suggested that one to five years was the time frame in which one would expect the ALS to run its course. However, in late August Betty and Earl received the devastating news that six months is likely the best that can be hoped for.

Although very much still herself, intellectually and emotionally, Betty now has many physical challenges to face. One of the symptoms of the ALS is that she has trouble swallowing and can choke very easily, even on her own saliva. She needs help to get dressed and eat. As Earl's work requires him to be away from the house eleven or twelve hours a day, Betty very much needs full-time, at home care.

While the cost of some of this care is covered under the British Colombia health insurance plan, Earl and Betty are now faced with many unexpected costs as a result of the ALS. In order that they can focus on the many challenges presented by the illness, we are joining together to try to alleviate some of the financial burden which their current situation places them under.

If you are in a position to contribute something towards these costs, we encourage you to do so. Betty and Earl were initially reluctant to let us try to organize this donation drive but have agreed that it would certainly let them focus their attention on reorganizing their lives in anticipation of the progression of the ALS. If you are not able to donate at this time, please do not feel any pressure.

Donation amounts will not be revealed unless you ask us to do so. Whether or not you are in a position to make a contribution to our fundraiser, we encourage you all to send Betty your well wishes and love through the guestbook on the "Send Betty a Message" page on this site - or through Facebook. As many of you know, Betty is (as always!) ahead of the pack when it comes to technology and social media. She'd love to hear from you!