Kitchener Walk for ALS on Saturday June 11 at Bingeman’s

The Record today has a wonderful article featuring the courageous battle Paul Chambers is fighting.  You can read part of it here, remember ALS research is important and underfunded. 

WATERLOO — The disease is terrible, steadily paralyzing Paul Chambers’ body.

“It’s a long death,” he said. “There’s no hope of fixing anything.”

Every day he gets weaker and sicker with amyotrophic lateral sclerosis, a fatal neurodegenerative disease also known as Lou Gehrig’s disease. That’s a tough reality for a man who was active every day, played just about every sport and taught physical education.

“It’s hard to watch your body fall apart,” said Chambers, 59.

But in the grip of such a dire illness, Chambers sees blessings.

“I don’t have time to feel sorry for myself,” he said.

Although the disease’s path is swift, with the majority of patients dying within two to five years of diagnosis, Chambers is thankful for the time he has still.

Time to be with family and friends. Time to prepare for his death. Time to cherish.

“If I had a heart attack and died, I wouldn’t have that opportunity,” Chambers said.

His many friends will join him at a June 11 fundraising walk benefiting the ALS Society of Canada for support services and research ( www.walkforals.ca). Last year, Chambers walked in the fundraiser. Now he needs a motorized wheelchair.

“ALS is a very unknown disease,” Chambers said. “It needs funding — not only funding for research, but funding for patients who are trying to make their quality of life as best as they can for the short time they have left.”

About 3,000 Canadians are living with the fatal disease with no treatment, cure or known cause. For every person diagnosed with the disease, another dies.

Come and support Paul and ALS research June 11 at Bingemans.  The 5 kilometre walk starts at 11 AM .

Ceftriaxone Study

The Ceftriaxone Study

Dr. Merit Cudkowicz, Principal Investigator for the Ceftriaxone study, will hold an informational web seminar for people with ALS interested in learning more about the clinical trial of Ceftriaxone for ALS. This will be a time to learn about the scientific rationale behind the study, learn about study procedures, and ask questions. Interested people can join the seminar on Thursday, May5th, 2011 at 3:00 Eastern Standard Time.

The Ceftriaxone Study Webinar
May 5th, 2011
3:00 – 4:00 PM EST
Merit Cudkowicz, MD, MSc
Jeremy Shefner, MD, PhD
Jeff Rothstein, MD, PhD
Contact: Stitus@partners.org

Registration Instructions

1. Please register to join the meeting by going online to: https://www1.gotomeeting.com/register/602945793

2. We recommend that you go online to register for the seminar a day or two before the seminar. After registering you will receive a confirmation email containing information about joining the Webinar including dial-in information.

The program will ask that you enter your first and last name upon registration. In the interest of privacy, we ask that you enter your initials only or your first name and last initial.

The Go-To-Webinar software is compatible with the following computer systems:
- PC Based attendees: Windows® 7, Vista, XP or 2003
- Server Macintosh Based attendees: Mac OS® X 10.4.11 (Tiger®) or newer

Please register early, space is limited. This study is taking place in the United States and Canada. Call-in information will be available for participants from these countries.

More information is available here.

Heather Snell Tribute – London Free Press

You can read it here

Heather Snell probably accomplished more in her 49 years to help conquer

the disease that took her life, than most of us ever will, ALS researchers say.

“It’s very difficult to hear she’s gone,” said Cheryl Lantz, a researcher at the Robarts Research Institute in London, where Snell, family and friends raised tens of thousands of dollars for ALS research.

“She was so courageous. It’s something you notice about families with ALS. They are fighters and they use their tragedies to help other people.”

Snell was diagnosed in 2006 with amyotrophic lateral sclerosis (ALS) , the same debilitating disease that claimed baseball Hall of Famer Lou Gehrig and perpetuated his link with the motor neuron disease.

Snell died Saturday.

The cruel disease that cuts short lives in their prime remains a frustrating “jigsaw puzzle” for researchers,” Lantz said.

“It’s like an onion and the more you dig, the more and more layers there are. And as researchers, we get impatient, especially when we lose a patient like Heather.

“But research takes money and Heather is an inspiration for us because she wants us to go on searching. And we will keep searching because we won’t lose hope.”

A funeral for Snell was Wednesday in her hometown of Ayr.

Dr. Kathryn Volkening, senior researcher in the Robarts ALS lab overseen by Dr. Michael Strong, said it’s difficult to lose another life to ALS but said researchers must struggle to keep their emotions in check and out of their research equations.

“It’s not easy when we lose a patient but we can’t let our emotions get in the way, as incredibly frustrating as this can be,” Volkening said. “For us, this research can’t go fast enough. But if we let emotions get in the way, we may not focus on a mechanism and how we can figure out what’s gone wrong.”

Volkening said Snell, her family and many supporters inspire researchers to keep searching for a cure. “Sometimes we get lost in test tubes and it takes a patient, like Heather, to remind us we are trying to save lives here,” she said.

At the last cheque presentation to the ALS research lab, Snell could no longer speak but tapped out a message on her laptop computer, urging Strong’s team to find a cure for ALS. She was forced to stop teaching piano and playing piano at her church but said, on her laptop, she admires those fighting ALS daily “with grace and dignity.”

Snell is survived by husband Bob and children Ben, Alicia, Stu, Meghan and Rosa.

Her obituary urges people to “pay it forward” with a random act of kindness.

E-mail maryjane.egan@sunmedia.ca, or follow MJatLFPress on Twitter.

 

or here

Libby Barrie’s Eulogy for Heather Snell

Children’s Time, In Memory of Heather…

A Quilt of Love and Comfort

We thought we’d have a bit of a children’s story today, for everyone who is a child at heart. Heather was a big kid, at times, and loved to have fun. With her in mind, I have asked a few of Heather’s younger friends to come forward and help me with a brief demonstration symbolizing Heather’s love for all of us here today.

Brooke Wanklin, who once invited Heather to visit her classmates, a story I’ll refer to in the eulogy.

Taylor Schmidt, who ran bake sales at the Preston Farmer’s Market each week last summer to benefit Dr. Mike Strong and the ALS Research Team at London Health Sciences Centre.

Ruth Orloci-Goodison, who was a member of Heather and Lynn’s North Dumfries Children’s Choir, with her sister Kathryn, for many years. Ruth recently wrote the following to me about Heather:

“I don’t know if you ever knew how much you taught me, but you taught me about exactly the person I want to be. Thanks Heather.”

Heather, in her wisdom, prepared us for this day, knowing it would not be easy. In us, she saw the potential to offer warmth, comfort & compassion. Many of us had no deep connection before – we represented different pages & times from Heather’s life story, but Heather had a plan for us.

She drew us close to her to embark on a journey that would change us all forever.

In the process, Heather, the seamstress, lovingly stitched us together…like patches of a quilt.

(The four girls are holding a large, patch-work quilt)

Some patches are more colourful than others (Zach and Lynn, perhaps), yet see how they all belong together. Similarly, Heather found a place for each one of us in her life. Alone, any one patch of the quilt would only be big enough to dry our own tears, but together we can comfort many. (The girls have wrapped the quilt around themselves and have drawn together for comfort)

The quilt can also provide shelter and protection in the storms of life.

(The girls lift the quilt up high and turn in under it for shelter)

Most of all, the comfort of the quilt will help calm us and bring us peace, especially when it gets dark. (All the kids nestle together, wrapped up in the quilt)

Because of Heather’s care & effort, on our behalf, we will not have to grieve alone.

Like a well-loved quilt wrapped tenderly around the shoulders of everyone here,

we can feel the warm, caring embrace Heather envisioned for us.

Like the young friends, nestled in this quilt, the faces that fill this place are thankful for the friendships we have discovered. The comfort we feel together is just one of many lasting gifts from our friend Heather. Thank you for your help friends.(Kids return to seats, quilt remains at front.)

Before beginning, I thought it might be easier to get through this if we envision Heather in her new home. She has accepted the position of accompanist for the Male chorus in Heaven, and, much to her delight, everyone in the choir looks like Keith Urban, Martin Mason, and Bob! Play on, Heather, play on! : )

I have entitled these thoughts:

Remembering Heather, Our Bravest of Friends

We have come to remember this remarkable woman with cheers and tears…

for we are among the fortunate souls who were blessed to share her life.

And what a beautiful life it was…

That little girl from the family farm, with the warm smile and big heart, grew up to be someone we will never forget. She was blessed with musical gifts, playing the piano with finesse and ease, and her musical talents were matched only by her spunk, sense of humour, and her impeccable style…

Heather was known to dress and accessorize with elegance and flair

and could pull-off the latest short, coiffed hairstyles like nobody else in town.

In writing to her closest friends at the time of her life-changing diagnosis, Heather dug deep to “lighten things up” by suggesting the trips to hospital would provide more opportunities to shop – maybe even across the border where the best outlets could be found. In her book “Dear Heather” she wrote:

“I did ask Dr. Strong if he could get me in at the ALS clinic in Hershey, PA. I told him I thought we could take a ‘coach’ with all the (girlfriends) and go shopping and then have a rest from shopping and have some chocolate and maybe go to the hospital for a minute and then go shopping and have more chocolate. He thought I was clever, I think – he laughed, anyway. Oh, and I wore black (of course) and my hot-pink & black coat, with the killer stiletto boots. I have learned quickly that it‘s good to stand out a little.”

As Heather’s friend Tammy Wanklin wrote about Heather visiting her daughter, Brooke’s class, “This amazing person was able to show her true self to a group of strangers who also quickly saw the woman and not the disease.” While many of the girls marvelled at Heather’s inspiring fashion sense & swanky pink purse, one of the deeper-thinking boys cut to the chase and asked, are you mad at God for giving you ALS? Heather replied, “Oh no, I don’t believe God gave me ALS…but I do believe he gives me the strength to get through it.”

A woman of faith and flair, Heather was truly modest…yet mischievous. : )

She was unassuming…yet always eager to celebrate the success of others.

And, as time passed, this farm girl who never wanted a fuss made about herself “grew up” and became our hero. Not because she could run the fastest, score the most goals, make the most money, or climb the highest mountain.

Heather became a hero simply because she embraced life…every moment…each joy, hardship, and sorrow. Remarkably, Heather did it all with wit, style, class, faith, humility, grace, and an inextinguishable spirit of hope.

Heather was so many things, to so many people.

Perhaps she was your childhood friend, classmate, or neighbour.

She was a piano teacher to some of you or your children.

It’s possible you sang in a choir Heather and her sister Lynn directed together.

She was an exquisite accompanist to soloists and choral groups.

Heather made spending time with dear friends a priority.

Regular travellers to the cottage, Heather and Bob also enjoyed trips to Myrtle Beach with their close friends for golf and shopping. Heather took it upon herself to nick-name each member of the group and then, based on the title Heather gave them, the friend was expected to stay in character for the entire trip. With names like “Spanky”,“Preacher”, “Stud” and “Dutchess”, just to name a few, you can imagine the fun this crew had! Her friend Teri says that fun was always a part of Heather’s world – what would be the point if it wasn’t? When her girlfriends blew a wheel off Heather’s wheelchair in Myrtle, a random stranger had to put her back together…at which point Teri got a text from Heather humorously stating, “You can’t make stuff like this up”.

Heather & Bob also enjoyed a beautiful Italian villa together with their dear

friends, the Taylors and the Woolners, a brave move on their part in light of Heather’s challenges. Of this trip Heather’s friend Martha wrote, “I am in awe of (Heather’s) strength, her resolve and her grace. I admire how she is trying to make every living day a memory for her family and friends. I love that she went to Italy for her 25th anniversary with her husband and close friends. I love that she spends as much time with her children doing things and creating memories as she can. I especially love that everyone wants to do all of this with her.”

Memories, photos & stories attest to the fun had with her many close friends.

She was just ‘one of the girls’ on the golf course – dressing in colour-coordinated outfits, sashes, and the odd tiara, Heather practiced what she liked to call “strategic golf” while enjoying the occasional libation from the “bar-cart”. This group of women, known as the “Fun Tour” kept Heather laughing, and when she could no longer play golf herself, she rode the cart and cheered them on.

A member of the “Dream Team”, Heather walked four times in the Weekend to End Breast Cancer. And it was Heather who insisted that the team wear their stilettos at night, blisters and all, when they went out on the town. When Heather was no longer able to walk, she came to Toronto to deliver a mix of hot chocolate & Baileys to team mates along the route, patiently waiting for them at the finish line to extend her warm embrace. Heather’s friend Teri says that the Golf Girls and “Dream Team” have learned the following things from Heather:

keep it simple …but don’t be afraid to dream big

love and support your girlfriends

take the back roads…look at the stars

picking the right outfit is very important

shopping is great therapy

music knows NO boundaries

your potluck dish should always be a surprise

go to church…pray often…God is always listening

keep hope alive

It is no secret that “Adversity” arrived on Heather’s doorstep over five years ago, an unexpected and unwelcome visitor.

But, by grace, a miracle of sorts also arrived on Heather’s doorstep five years ago…an unexpected visitor named “Hope”.

Hope came to Heather in the form of you, her friends & family…all of us here.

Not one to sit by idly, Heather took the cards she was dealt and started a revolution of Hope. She tirelessly championed ALS research. To date, somewhere in the neighbourhood of one quarter million dollars has been raised to help Dr. Mike Strong and his team at London Health Sciences Centre, as well as the ALS Society. Though today is all about Heather, we would be remiss if we failed to acknowledge her tremendous contribution to raising ALS awareness and funds.

(As I look out and see the blue throughout this sanctuary, I realize that this will always be the colour of hope in this community of friends, and when we wrap ourselves in it, we feel Heather’s love and hope therein.)

I think even Heather would have a hard time denying that, thanks to Heather’s Hootenanny for Hope:

We now know the joy of deluxe four-seater porta-potties (thanks Aunt Connie!)

We’ve learned to enjoy pickles on a stick (thanks Annie!)

We’ve helped Zack Werner find Glen Morris and perfect his putting shot enough to win the annual Hoot “putt-off“ (thanks for wearing the blindfold, Dr. Mike!)

We’ve witnessed the miracle of hope in a giant rainbow over Paris after the relentless storm (thanks God!)

And we’ve watched Heather and Bob dance until midnight, surrounded by family and friends, while the band played “She’s Some Kind of Wonderful”.

Thanks to the Hoot, we’ve seen Heather awarded with the Roger’s Woman of the Year Award for volunteer contributions, and, in small town Ayr, ON, we’ve witnessed our girl being honoured with the very auspicious AYR HEAD Award!

(Now if that’s not worth the work of a Hootenanny, I don’t know what is!) Yes, because one woman had the courage to make a little “music in the barn” with her friends…the hopes of finding a cure for ALS will continue.(Thanks Heather!)

Of course, none of the above would have been possible for Heather, without a posse of talent to back her up. Thankfully, for decades, Heather performed with her dearest sisters and friends in Distinction. If you were lucky enough to hear this group, you will recognize the magical, musical bond that they share – genuine, precious, and undeniably rare. How fitting it was that this beloved group of sisters and friends could gather at Heather’s bedside last week to sing songs from their past, Christmas Carols, hymns, and even Boogie Woogie Bugle Boy, complete with choreography. As Heather played air piano and conducted from her bed, this circle of musical friends lovingly sang our friend home.

This past Sunday afternoon, Distinction gathered in Glen Morris Church, singing for the first time in memory of Heather. Hearing their perfect harmonies and seeing their collective strength was truly like witnessing a miracle. I suspect it was only made possible because of Heather’s inspiration and their collective faith & belief that “God is love” and nothing is too hard if you can remember that.

Heather shared her love of Glen Morris and Ayr with her family.

As a cousin and niece, she celebrated her ties to the Kelman and McRuer clans.

Heather had a deep love for her Snell family, those she inherited through Bob.

It’s likely that any of us who have helped with a Hootenanny event over the years has secretly dreamed of becoming an honorary Kelman, McRuer or Snell – there isn’t anything that these loving, giving, hard-working folks can’t pull off!

Heather was a loyal, loving sister & Aunt, always interested in the lives of Lynn & Bill, Mary & Pete, Doug & Beth and all of her siblings’ children. She enjoyed working with Lynn accompanying the choir at Glen Morris church and also helped at Music Plus. Bill tells me that after encountering “difficult” customers, Heather was known to offer tidbits of wisdom like, “you can’t cure stupid”.

As a daughter, Heather devoted herself to caring for Barb & Gord when they needed her most. When we visited recently, she marvelled at her Mom’s grace throughout her cancer journey & the strong-willed faith that sustained her Dad. (Grace & strong-willed faith – now we know where Heather got it!) My In-laws have remarked many times how proud Barb and Gord would have been to witness Heather’s grace and courage. How sweet their reunion, now, must be.

From her beautiful home near Bright, just outside of Ayr, Heather’s love for life extended to her beloved dog, Rosa. In this beautiful home, or “Lodge of Love”, Heather was treated to regular visits from birds at her window…especially cardinals which held a special place in her heart. Something tells me we will be seeing lots more of Heather’s cardinals, here and there, in the years to come.

As a Mother, Heather was totally devoted. Nothing mattered more to her than Ben, Stu, & Meg – her pride in each one of you was truly evident. Heather poured herself into guiding, nurturing, & loving her kids and their friends,

most recently welcoming daughter-in-law Alicia into the Snell family, with joy.

Heather’s life took a pleasant turn, many moons ago, when a young Robert Snell turned to his buddy on the steps of Stan’s Pool Hall to say, “If you break up with Heather Snell, you’ll never get her back, because I’m going to date her.”

A mere six months after Bob’s declaration, he and Heather were married…and so the story began. Their three beautiful children are a testament to their love.

But Heather and Bob’s love story isn’t like any one else’s I know.

When they promised to care for each other “in sickness and in health” I’m not sure either realized the true meaning this vow would have.

Both Bob and Heather have continuously praised the other, giving credit to their spouse as the source of their inspiration and courage. Recent years tested their resilience, and yet they greeted each day, head-on, united by a spirit of hope and determination. Because of their love and commitment to each other, Bob and Heather have taught us all to make the best of life’s most difficult challenges. Along with their children, they have demonstrated how to live, love and laugh…even in the face of profound adversity. As Dr. Mike Strong recently wrote to Bob from Africa, “Wendy and I send our heartfelt gratitude for having the honour to know Heather and to have been so warmly welcomed into her world. She and all of you will be in our thoughts forever. Bob, it is a mark of a true love for another how much one really lives out their vows. You and Heather were a remarkable couple. It is because of you that we do what we do. I know that Heather is at peace, although I suspect that her new choir hasn’t figured out what has hit them yet!” (Good point Dr. Mike…keep envisioning Heather playing for her male chorus and we’ll get through this, I promise!)

In the end, Bob summed up Heather’s journey in this way,

“I would have to call it a draw. Heather did not beat ALS…but ALS did not beat Heather.”

And though we have lost Heather, as we knew her in this life, Hope is not lost.

Heather’s friend Ralph wrote a few days ago, “Someone told me there are angels, lots of them…that they appear from time to time to make an announcement or to comfort and reassure us when we need to be re-assured…Sometimes they show up to kick some serious butt…remind you of anyone? When I think of Heather I am reminded you do not have to be saint …to be an Angel”.

Heather would be the first to agree that she was no saint. She was ordinary and extraordinary, all at the same time. That’s what makes her story so compelling. Thankfully, she has already shown us what she expects of us. In her book “Dear Heather” she writes: “I see people doing what they can to make the world a better place. A friendly smile, a hug, a helping hand, all of these and more can make a real difference to each of us, every day and any day. So you see, we are all Heroes. When life is “good” we celebrate with one another and when life challenges us, we turn to each other and know that love and friendship will sustain us.”

Heather and I enjoyed some special visits over the last two weeks, and she asked me to read the following verses to her, again and again.

The biblical verse Micah 6:8 reminds us what life requires of us, “to seek justice, love kindness, and walk humbly with God.”

She also loved the verse from Philippians Chapter 1 that promises that “God, who began a good work in us, will be faithful to see if through to completion.”

Yet, it’s hard not to feel as though Heather’s life was incomplete. We all would have kept her longer if we could have. BUT, imagine the possibilities of everyone here using Heather’s inspiration to make a difference in the lives of others. This “pay it forward” attitude will be Heather’s lasting legacy. Love never ends. Heather is in our hearts.

Life is mysterious…it’s in our most profound moments of grief we find the true beauty of love. Heather’s cousin, Sharon Cochrane Schwegler, sent this poem:

Sometimes the things that seem to hurt us the most

are the very things that bring out the best in us……

They are the struggles that help us discover the faith we thought we’d lost…..

the strength we didn’t know we had…..

the courage to let go of the past and begin again…..

Because challenges help us to see who we really are,

where we want to go and what our lives can be

If only we have faith and keep on trying…

Because we have seen the love of God in Heather, she has brought out the very best in all of us. Our capacity to live, love, and laugh with grateful, hopeful, open hearts is greater…because of her example.

I’m going to let our friend, or as I like to call her, “Brave Girl” have the last word. I believe these words of hers are intended for all of us, and not just me. In one of my last notes from Heather she finished her thoughts by saying,

“You and your family are in my prayers. God is good & He has a plan for us –  it’s a good one! I love you – Heather Xo”

Thank you.

Funeral Arrangements

 

Location

Ayr Chapel, Wm Kipp Funeral Home
183 Northumberland St, Ayr

Visitation

Monday February 14th 2011  7:00pm – 9:00pm
Tuesday February 15th 2011  2:00pm – 4:00pm
Tuesday February 15th 2011  7:00pm – 9:00pm

Service Information

Wednesday February 16th 2011 11:00am
Knox United Church
92 Northumberland St.

Officiating
Rev. Brenda Otawa

Reception

Knox United Church
92 Northumberland St.

More details can be found here.