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I am a caregiver – now, today and forever.

On By sunnyvykunIn All

On Thursday, June 4, 2015 guests at the Ability & Beyond Dinner presented by Bell will be inspired by Captain Mark Kelly’s “Endeavour to Succeed” keynote address.

Captain Mark Kelly is an American astronaut, who flew missions aboard the Space Shuttle Endeavour, the Space Shuttle Discovery, and is one of only two individuals who has visited the International Space Station on four different occasions. He is also a retired US Navy Captain, bestselling author, prostate cancer survivor, and an experienced naval aviator. Named one of Esquire’s 2011 Americans of the Year, Kelly exemplifies leadership, the importance of teamwork, and courage under pressure.

Captain Kelly and wife Gabrielle Giffords
Captain Kelly and wife Gabrielle Giffords

Captain Kelly will speak about his incredible life and his personal experience caregiving for his wife, former US Congresswoman Gabrielle Giffords, during her recovery from a traumatic brain injury, the result of an assassination attempt in 2011.

Captain Kelly will share stories designed to inspire and help people find their purpose. He says he has learned valuable lessons from his experiences flying in combat, his space missions and more personally, when his wife was shot and his world changed forever. He became Ms. Gifford’s primary caregiver during her recovery from her brain injury, which also resulted in aphasia. He continues this role today, and cherishes it.  He will speak of his life as a caregiver, and how living with aphasia affects the whole family.

Approximately 1/3 of brain injury survivors will have aphasia. The condition causes communication challenges, but is not a sign of reduced intelligence. Understanding aphasia is crucial to helping improve communication not only for brain injury survivors, but also their caregivers, loved ones and families.

March of Dimes Canada provides services for people with aphasia through a number of programs, camps and support groups. All of these are crucial to helping alleviate the isolation and depression that can occur when first learning to live with the condition.

Captain Kelly is thrilled to be sharing his life lessons with guests at a fundraiser supporting March of Dimes Canada’s Aphasia and Communication Disability Program (ACDP).  His wife lives with the condition, and weekly visits an aphasia communication group, similar to those offered by the program.

“I am very excited to be coming to Toronto and sharing a bit of my story with March of Dimes clients and supporters,” says Captain Kelly. “I hope that guests will leave feeling empowered and learning a little about the power of the human spirit, to recover and to overcome.”

For tickets and more information, click here.

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L.I.F.E. Toronto: Money Matters Workshops with ABC Life Literacy Canada and TD Bank Volunteers

On By abittner944In All, L.I.F.E. TorontoLeave a comment

The L.I.F.E. Toronto program had the amazing opportunity to participate in two Money Matters workshops. Volunteers from TD Bank came into our classroom to teach us all about financial literacy.  The volunteers helped us learn how to take better care of our money and be more responsible with it. We learned how to write cheques and how to use ATMs.  We set up a mini store to practice buying items such as chips, chocolate, coffee, milk, apple, a case of pop, a hat and a package of gum with fake money and coins. We would like to thank the volunteers from TD Bank for their support,  encouragement and enthusiasm. It was great working with them.  We learned a lot and had fun doing so.

L.I.F.E. Toronto program continues with the support of United Way Toronto, TD Canada Trust, Toronto Community Foundation, and Royal Bank.

Why is polio still important? Polio Still Exists in 2014 #polioawarnessmonth

On By abittner944In Advocacy, AllLeave a comment

I developed polio in London, Ontario when I was eight years old. Years later, I started volunteering with Ontario March of Dimes, now March of Dimes Canada and have been a volunteer for over 25 years.

I became involved with March of Dimes because I was desperately looking for answer to what was causing my new pain, weakness and fatigue. My life changed when I attended a conference called “Polio: A Second Challenge” held in Toronto, Ontario, and sponsored by March of Dimes, and I learned that I had post-polio syndrome.

This inspired me to chair the Sudbury Post-Polio Support Group for 11 years. Presently I Chair Polio Canada and sit on the board of March of Dimes Canada, and Polio Health International St Louis, Missouri. I have attended Post-Polio Conferences in St. Louis, Missouri, Toronto, Vancouver, Newark, New Jersey and Warm Springs, Georgia. I participate annually in the L.I.V.E. (Leadership in Volunteer Education) conference, sponsored by March of Dimes Canada I continually advocate for better awareness of polio and how devastating it is not only to those who have the virus, but also to their families.

I want to see every child inoculated. This is important even in the western world. Polio is only a flight away. I remind all parents about the devastation of polio – and that it lasts for the rest of your life. Post-polio syndrome robs adults of their freedom. They will live with pain, new muscle weakness and unbelievable fatigue. Many survivors like me have had to return to the assistive devices, i.e. wheelchairs and braces; that we had fought so hard to throw away as children. The best way to keep the memory alive is to join our campaign, if you are a survivor, a family member or a concerned citizen get the word out about polio and WHY it is still important today!

According to the WHO, polio immunization saves 3 million lives and prevents 750,000 disabilities worldwide each year, making it ‘the single greatest public health achievement of all time.’ (CPHA – online).

In 1951, March of Dimes Canada was founded to raise funds for a vaccine to end the scourge of polio – and our advocacy continues today.

October is Polio and Post-Polio Awareness Month. We are starting a social media campaign to remind people that polio survivors are still here and living with post-polio syndrome. As a polio advocate, we hope you can help us to spread the word and use the hashtag #polioawarenessmonth

To do this, we are encouraging people (in 25 words or less) to write our hashtag and the “Polio still exists in 2014” in black marker on a whiteboard or white bristol board. If you could send a picture to March of Dimes Canada (via email at info@marchofdimes.ca) of you holding this, we can post to our social media accounts; letting people know the lifelong consequences of polio and post -polio syndrome. 

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Elizabeth Lounsbury, Polio Survivor and Post-Polio Syndrome awareness advocate

Follow, share and advocate with us our #polioawarnessmonth campaign on Facebook, Twitter, Instagram and our YouTube channel.

Elizabeth Lounsbury.

Jessie presents TD Bank Group with the Jonas Salk Circle of Friends Award at the Ability & Beyond Gala 2014

On By abittner944In All, L.I.F.E. TorontoLeave a comment

My name is Jessie. I’m 28 years old and I’m from Toronto.  I live at home but one day I hope to reach the milestone of eventually moving out.  I have cerebral palsy which affects my arms and legs, my hand coordination, my learning, and my speech.  I use many methods of communication, however my main method is my speech generating device, called a DynaVox.

The LIFE Toronto program teaches young adults independence needed to fulfill a meaningful and productive life. During my first session in March 2013, I was ecstatic that I was going to be involved with a program.  Since graduating from school, I’ve had a tough time transitioning from being a student and being involved in camps and programs to becoming an adult and seeing my active life shutting down before my eyes.  Since joining LIFE I’ve became happier, more active and I started to have meaning in my life again.  I was very fortunate that I was asked to be a mentor for the next two sessions I attended.  As a mentor, I set a positive role model to the other participants. I encourage them to try new things and be amazing individuals.

(L to R) Rosemarie Owens-Tunney, Associate Vice President of TD Bank Group receiving the Jonas Salk Circle of Friends Award; Jessie Weber, mentor & participant of MODC / LIFE Program; and Andria Spindel President & CEO of MODC

I recently had the honour to represent LIFE Toronto at the Ability and Beyond gala on June 12, 2014.  TD Bank is March of Dimes best financial supporter and they have given much of their own time and effort to give to March of Dimes.  I was given the privilege to present an award to TD Bank, as they very kindly donated just over $1 million to March of Dimes Canada.  These funds contributed to the LIFE Toronto program. When I learned this, I was very grateful as this magnificent donation will only help LIFE Toronto program improve and grow. Knowing TD is supporting March of Dimes Canada LIFE Toronto program.

LIFE Toronto is an amazing program which combines fun and learning experiences. My favourite parts of the programs would have to be the camp out days with Outward Bound Canada, the TD Money Matters workshops and the Conductive Education sessions.  Thinking back to these parts, all of them have contributed to my personal growth during LIFE.  The Outward Bound programming showed me that anything is possible if I put my mind to it.  During the day camp out I worked as a team to put up a tent without staff’s assistance for the first time and I also reached the milestone of swinging on a regular swing.  I always look forward to each session and I enjoy seeing what I accomplish next!

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Jessie puts up a tent

 

Jessie swings on a regular swing
Jessie swinging on a regular swing

To learn more about LIFE Toronto Program please click here.

Meet Nektarios

On By abittner944In All, Conductive Education®1 Comment

Nektarios first came to March of Dimes’ Conductive Education® program in the summer of 2002 and started attending weekly classes soon after.  Twelve years on and Nek still attends CE classes whenever his schedule permits.  When asked why he still chooses to attend Nek says “To be perfectly honest, CE has been the best program for me.” Back in 2003 staff working with Nek introduced him to, and taught him how to walk first with two quad canes and then only one.  “It took me a year to get used to it and then every year after it became easier to me”.  Many services for children with cerebral palsy stop at the age of 19.  March of Dimes’ Canada Conductive Education® program is one of the few programs that extend the program to adults with CP and other neuro-motor disorders to learn the skills and techniques to overcome daily challenges.  Problem-solving skills are a key to gaining independence and Nek has made great gains in this.  Staff have enjoyed seeing how much Nek has progressed and grown over the years, always looking for news ways he can accomplish tasks more independently.  It has been wonderful to watch Nek grow into a young adult.  “He has learned the importance of maintaining his flexibility and strength and works hard each week to learn new skills that he can transfer into his everyday life.” says Mhairi Watson, Senior Conductor at March of Dimes Canada.  Nek has recently graduated from a three year degree program in Sports Management at Durham College and is currently looking for full time employment.

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When You Hear Someone Knocking At Your Door It Might Be A Volunteer From March of Dimes Canada

On By abittner944In All, Our VolunteersLeave a comment

By: Mary Lynne Stewart, Director of Fund Development and Communications, March of Dimes Canada.

This winter has been a long one. We have all been affected by the ice and the temperature and it has made me admire the brave spirit of our Door-to-Door volunteers as they have gone out despite this cold weather and knocked on the neighbors’ doors. It has been my privilege to meet some of the folks that do this for March of Dimes, and again I am always reminded of why we work for March of Dimes. We have dozens of volunteers who have been doing this for over 20 years. We always try and say thank you but somehow it does not seem enough. Stories of what I call heroes are what we remember at the end of the day. People ask why do we do this in January?  The reason is that it goes back to our roots when the organization started, and the bigger story is of what the ‘Marching Mothers’ of the 1950’s did for their children to stop the epidemic of polio. They went door-to-door to collect dimes to stop this horrible disease and I think they were heroes, just as I think our door-to-door volunteers are heroes. It takes courage to knock on your neighbour’s door. I know how I feel when I am sitting down with my family at dinner and someone knocks at the door. You think “Who is at my door and bothering me?” but I always go to the door and give because I think of our volunteers going door to door. My thought is that if I am nice to whoever is at the door, people will be nice to our volunteers.

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Joan Hobbs

This is March of Dimes month and we want to celebrate our volunteers by letting them know how much we appreciate what they do.  One volunteer who truly embodies the spirit of our Door-to-Door campaign is Joan Hobbs, who has been involved with the Door-to-Door Campaign in Aylmer for an astonishing 57 years! Joan started her volunteer campaign with a group of women in her community. At one point about 20-25 years ago, as each of the ladies passed on, the job of knocking on doors became too much for Joan to handle.  Many people would have simply stopped volunteering at that point – but not Joan!  Instead, she converted her door-to-door campaign to a mail campaign – and continues to do so. Each year, she personally stuffs and labels more than 3,000 appeal letters!  As donations come in, Joan personally hand-delivers receipts to donors. She has raised more than $3,000 every year for the last three years. It’s a fair guess to say that over the last 55 years, Joan has helped to rise over $150,000 for March of Dimes!  Joan proves unequivocally that one person can truly make a difference.

So my closing thought is: remember when you look out at the snow and you hear someone knocking at your door, it might be a volunteer from March of Dimes that is there on behalf of Canadians with disabilities. So please open the door and thank them for doing what they do.

If you would like to become a March of Dimes Door-to-Door canvasser or online canvasser and would like more information please click here.

Mark’s Strive for a Ride

On By abittner944In All, InitiativesLeave a comment

By:  Tracy Lomond

I knew 7 months ago when we decided to start fund raising for a wheelchair accessible van for Mark that it would be a huge challenge. What I didn’t expect was that it would turn out to be like a full time job, one that would not only change me but other family members as well. It is funny to look back and see a family of very shy and passive people actually going up to strangers and asking for money, merchandise, and haggling prices at flea markets all in the name of making money for Mark. Mark is a 17 year old boy with severe cerebral palsy who is wheelchair bound and requires full time care. He is non verbal and for those of us who know him best you can either tell what he wants just from experiencing his daily routine, by his smiles for yes or shaking of the head for no or sometimes you can just see it in his beautiful blue eyes.  In the past two years he has had three hip surgeries and numerous treatments and appointments in Halifax, at least 9 in the past year. There hasn’t been very many months out of the past two years where we were not making a trip to the IWK. It’s heart breaking to see him go through so much. He has such a frail small body but a huge lovable personality. Once the hip surgeries were over and the chronic pain managed we decided it was time to take on the challenge of fund raising for the van. Not just because of the frequent trips to Halifax or the fact that the van we are currently driving will not see past this November’s inspection but because in February Mark will turn 18, an age when programs seem to expire as 19 is considered adulthood. The 9 trips I mentioned earlier, well those were not easy considering I had to borrow a vehicle to make the trips. I am scared to take the van I am currently driving the 22 km trip to his doctor, I certainly did not feel it could go the 400km one way trip to Halifax. So starts our journey.

One of our first fund raising ideas was selling tickets on a dozen of lobsters and 24 beverages. This was a hugely successful endeavor. Then I made up a sort of information package that I started e-mailing to everyone I could think of from local businesses to Ellen DeGeneres and Bill Gates. The information package included a flyer with Marks picture and a brief description of the purpose of the fund raiser, a letter from his occupational therapist supporting our efforts, and finally a letter from me describing in detail our situation and why we were doing the fund raising. I describe the fund raising as a full time job because it sort of took on a life of its own. We found ourselves at various malls selling tickets, gathering donated household items or clothing that we then sold off at flea markets almost every Sunday, a benefit dance, a merchandise bingo, personal donations, and even applying for any grant I could find on-line. I kept a journal of every e-mail, phone call, flea market, and a count of every book of tickets sold.

Through our personal efforts stated above and donations from clubs such as the Lions Club, the Kiwanis Club, the Royal Canadian Legion, Sydney Mines Seniors Pensioner Club and gift certificates for prizes from numerous local businesses we raised just over $12, 000. We were ecstatic to learn that we were approved for a $20,000 grant through the President Choice Children’s Charity. This was a huge piece of funding towards our goal and it definitely kept the family motivated. A huge donation of $5,000 was made by an anonymous donor. We couldn’t believe how generous people truly are. Then we won a contest through the March of Dimes and Pennzoil for $15,000 towards the retrofit (modification and conversion for wheelchair accessibility) of a vehicle. Global News Halifax picked up the story and we were on camera Nov 1st explaining our journey.

L to R: Mary Lynne Stewart, Travis Gunn, Michelle Watt, Tracy Lomond, Mark Lomond

That night at the annual Rock for Dimes concert, at the Cunard Arena in Halifax, we were presented with the contest winnings.  It was a trip that none of my family members that were able to attend will soon forget. Finally, an anonymous donor gave us the remainder of the funds approx $2,000 to complete our goal. What usually takes 1 to 1 ½ years to do, we have accomplished in six months. We are truly blessed to have friends, family, and strangers who supported our cause and allowed our journey to end with a new Dodge Grand Caravan modified with a wheelchair ramp. To say that having this van will change our lives is an understatement. It is crucial to have a reliable vehicle to travel back and forth to Halifax every 3 to 6 months (depending on the effect of the treatment) for Mark’s treatments. It is projected that these treatments will be ongoing for many years, if not for the rest of his life. With such health obstacles and life challenges, one realizes what’s important in life, and what I think I’ve learned the most is that we have to appreciate life. I believe it’s all about perspective; life is so short and frail. There isn’t a day that goes by that I don’t thank God for my family, friends and most of all my two children, Mark and Aaron. I cannot begin to express my gratitude to those who donated gifts, merchandise, money, their time and prayers. All I can say is, “Thank You, and God bless you as he has blessed me.”

I wanted to share my story, not because it was a successful journey in such a short amount of time, but because I wanted to inspire people to never give up or to be scared of a challenge… it is truly worth it in the end!

Sincerely,

Tracy Lomond

Campers Helping Campers

On By abittner944In AllLeave a comment

Looking back, we are thrilled to see that the March of Dimes Canada Campers Helping Campers Program has enabled kids and adults with physical disabilities participate in outdoor activities for over 40 years.  What once was a wish and an ambition of a couple of Ontario campground owners, today this evolved into a program supported by 200 campgrounds, campground staff, and campers across Canada.

We wanted to learn more about the program, and there is no better person to give us that inside look than Dennis Ullman.  Dennis has been with March of Dimes Canada since 1989 and has been the driving force behind Campers Helping Campers program for over 20 years. We caught up with Dennis for a chat while he was preparing for a Rock for Dimes fundraiser in Bingemanns Park.

MARCH OF DIMES CANADA:  How did you become involved with the Campers Helping Campers program?

DENNIS ULLMAN:  In the early 1990s while working for March of Dimes Canada I was introduced to the Campers Helping Campers program and soon realized there was tremendous potential for both the campgrounds and March of Dimes.  I have been able to develop some great friendships and relationships with campground owners, their families and managers, and found they were eager to help individuals with disabilities experience camping and the outdoors by organizing and facilitating fundraising events to support March of Dimes Outdoor Recreation programs.

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MODC:   Whenever we hear you speak about Campers Helping Campers program, we can’t help but notice your passion for the program; where does this passion stem from?

DU:  The Campers Helping Campers program raises funds for those who otherwise would be unable to attend a summer camp program, and I truly believe that everyone should have the opportunity to experience camping.  It is also the passion of the campground owners, camp staff, and campers that drives me.  It is a real joy to work with volunteers and supporters who support the March of Dimes summer recreation program and support them in developing new ideas to help keep the program fresh.

MODC:  Can you give us a sneak peek at what exciting fundraising events will  take place this camping season at some of the Ontario Campgrounds in support of Campers Helping Campers?

DU:  Some of the highlights include; Rock for Dimes at Sherkston Shores, and a variety of special events at various campgrounds as Sandy Beach Resort who will host their annual kids’ day and silent auction, and Country Garden’s RV Park who will host a corn roast, quilting retreat, book sale, and their famous home-made pie auction.

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MODC:  How can a campground or an individual become involved in the Campers Helping Campers program?

DU:  Visit our website at www.marchofdimes.ca/campers or send an email to campers@marchofdimes.ca.  There are a number of opportunities for individuals, campers, campgrounds, or simply anyone who would like to be involved.  This year we have also introduced www.mymod.ca, where interested individuals can make online donations.

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Summer season might be coming to an end, but campers across Canada are still pitching their tents, firing up the fire pits, and enjoying last days of summer, and camping well in to the fall.

Share your best camping memories in March of Dimes Canada Campers Helping Campers Presents: Camping Memories Facebook Essay Contest.  You can support the Campers Helping Campers program and get a chance to win  March of Dimes Canada swag.  The contest runs from Wednesday, August 28, 2013 at 4:00:00 p.m. EST until September 8, 2013 at 11:59:59 p.m. EST.  Open to legal residents of Canada (excluding Quebec).

We would like to thank all the participating campgrounds, campers and campground staff for supporting March of Dimes Canada Campers Helping Campers Program.  See you next year!