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ALS Stem-Cell Research Canada

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Pioneering A World-First Treatment for ALS in Canada.




 The Challenge = Cure Amyotrophic Lateral Sclerosis (ALS)  
ALS is a rapidly progressive neurodegenerative disease that affects the motor neurons of the brain and spinal cord causing progressive paralysis and death.  There is no known cure or effective treatment.

We have a Better Vision
- to fulfill before December 31st, 2017

Our vision
is a Canadian pilot clinical trial in ALS patients, evaluating the efficacy and safety of this therapy.   If successful, our goal is to then hasten its introduction into clinical practice in order to improve care and health outcomes for ALS patients.

Partnering for a Cure
Canadian families have joined forces in an effort to advance stem cell research that will hopefully unlock a cure for ALS. We welcome all families who wish to join our fight!


An Urgent Call for Action: 
Our goal is to develop a unique cellular replacement treatment that restores health and motor function for patients with ALS, in order to prevent progression of disease and potentially offer a cure.

Our Experience with ALS:

- We have spent the last 20 months traveling across North America, developing an understanding of the research landscape, by interviewing neurologists and renowned investigators from the most acclaimed neurology/ALS clinics and hospitals.

- We visited and/or contacted a dozen independent clinics falsely claiming they have stem-cell protocols to treat neurological diseases.   Warning: There are many scams!

- We have participated at major ALS & motor neuron disease consortiums and collaborated with major ALS political advocacy groups & ALS leaders/heroes from around the world.  

- We are familiar with the most current evidence-based research.  

- We reviewed every ongoing clinical trial including any up and coming trials that may become available to Canadian families living with ALS.  There are absolutely none worth mentioning.  

- Jeff (our founder) has also met with the CEO's of the top 2 pharmaceutical companies researching and developing stem cells in the US and Israel, both of which are publically traded companies.  The results: there is ZERO chance for Neuralstem or Brainstorm to ever expand their US/Israel trials to Canada.  We have exhausted every option imaginable/available to patients via Health Canada. 

- Countless hours have been invested in applying to participate in the top clinical trials that are being offered in only the US and Israel.  Even with personal referrals from leading U.S. and Canadian neurologists, along with daily persistence, time-after-time, we have been rejected.  Turns out, American stem cell trials require American citizenship for enrollment.   

- What does this mean for Canadians? It means, there are no trials available or planned for "us" in the short or long term. This is a huge problem! No plan, means no treatment… which means no hope for a cure. 

- One year after Jeff was diagnosed, it became very clear that if CANADIANS were EVER going to have a chance at treatment or at a cure for ALS, we would need a CANADIAN clinical trial!   This is the truest statement!  However, Health Canada, the Provincial and Federal governments, and ALS Canada DO NOT currently have any initiatives supporting ALS stem cell research in Canada.

To be successful,
our focus and dollars need to be invested directly into research we “know” stands a realistic and viable chance for Canadian ALS patients and families to access a ‘pilot clinical trial’ in ALS humans within the next 12 to 18 months. 

The ‘turning-point’ came when Jeff met with Dr. Lorne Zinman in June of 2015.  Dr. Zinman is Director of Canada's largest ALS clinic and Chair of the Canadian ALS Research Network.  A heated discussion related to the urgency to act NOW, led to what is currently the best and only viable option for ALL Canadian families living with ALS.

We have since integrated a step-by-step strategy, including a realistic timeline, funding goals/priorities and project budget, enabling ALL Canadian ALS families to donate and to understand exactly where their dollars are going.

Adaptive Canuck ALS Foundation
 has committed their time, energy, money, focus and HOPE towards PIONEERING a world-first treatment for ALS, by December 31st, 2016.

The exploration of stem cell research for the treatment of ALS offers tremendous hope for patients and families affected by the disease, and remains a major focus of the international ALS research community.  Combining unique expertise in stem cell biology, the investigation of neurodegenerative diseases, imaging technologies, and fundraising.  The Adaptive Canuck ALS Foundation, University of Toronto, the University Health Network (UHN), and Sunnybrook Hospital have partnered to advance a novel approach to treating ALS which harnesses the power of regenerative medicine. Working alongside our Partners; our Experts; our Team!


Why do we Absolutely Need to have our own plan?
“Ask ALS Canada, and they will tell you themselves they have nothing whatsoever planned, ‘in-the-oven’, ‘on-deck’ for years to come with regards to funding stem-cell research for Canadians ALS families - Human Stem-Cell Clinical Trial is not on ALS Canada's agenda”, says Jeffrey Perreault.

We have met with the CEO, VP of Fund Development and Director of Research of ALS Canada.  They are good people, but they showed very little interest in understanding that for families living with ALS, time is what matters the most.  ALS Canada’s arbitrary timeline and motto is ‘Treat ALS by 2024’!  That is simply unacceptable to the 3000 patients and their families affected by this terrible and deadly disease.  In Canada 25 PALS's die everyday (or 9125 / year or 80,000+ between now and 2024)!  They are clearly & fortunately not living with a PALS who suffers daily.  Unfortunately, our efforts have been and will continue to be widely independent from ALS Canada.  We challenge ALS Canada to match any/all funds raised by Adaptive Canuck and to contribute even further to the MOST HOPEFUL cause available today for the Canadian ALS community.

Canadian families living with ALS are undoubtedly lost, and rightfully so.  Regrettably, valuable time is wasted unraveling and digesting all the painful information and realities.  ALS families don't have the necessary resources required to help focus their HOPE in stem cell research in Canada. 

The Only Reasonable, Realistic Course of Action for Canadian PALS.  
100% of our focus needs to be invested here in Canada.  Therefore, 100% of that focus needs to be directed to supporting the ONLY credible stem cell research, at the University of Toronto.  It is our ONLY option!

Here is the Solution:  Human Clinical Trial by December 31st 2016.  The research initiative has three key phases.

So far, we have differentiated stem cells obtained from articular cartilage, into neurons that appear to be motor neurons - the cells that are most affected by ALS.

We have now completed Phase 1 of animal studies using a groundbreaking ultrasound technology to non-surgically transplant these cells into the spinal cords of mice.  This special MRI-guided ultrasound opens the 'blood brain barrier' of the mouse, allowing stem cells, injected through the bloodstream, to enter the specific area of spinal cord that is targeted by the ultrasound.  This technique avoids any damage that might be caused by surgery and direct implantation of the therapeutic cells into the spinal cord. 

TODAY - Right now - with your help - we can get Phase 2 up and running.  We are 12-18 months away from a pilot clinical trial in ALS human patients in Toronto!  Compare our research and timeline on an international scale, and you will soon agree this is the best, and the only hope for all families living with ALS in Canada.  We must all rally together in support.  100% of the money raised directly supports our ability to advance our critical study.  For someone with ALS, time matters most.

But first, we need to fund and complete a pre-clinical evaluation in an ALS model - in mice (this process will take 12 to 18 months).

In Phase 1 we demonstrated that our transplanted stem cells display key features and characteristics of motor neurons and can integrate into the spinal cord of mice. The use of stem cells that function like motor neurons, would provide a unique source of cells to replace the function of motor neurons damaged by ALS, and help treat the disease. Now, in Phase 2, we are poised to study how our transplanted cells function - and determine whether they can restore function - using an established disease model of ALS. In this phase of our research, we will also validate the best source of stem cells for potential human clinical trial of this therapy.



Please help us give HOPE to people suffering from ALS by supporting the advancement of stem cell research in Canada. For those suffering from this disease, time matters most. Help us raise awareness and donate to this incredible research.  

We have a BETTER plan.  100% of the money raised directly advances Research at the University of Toronto and helps fulfill our vision of a pilot clinical trial for Canadian ALS human patients by December 31st, 2016

We desperately and sincerely need your fundraising efforts!

For more information please contact us


About Toronto General & Western Hospital Foundation
Established in 1986, Toronto General & Western Hospital Foundation is dedicated to supporting excellence in health care by raising funds for research, medical education, and the improvement of patient care at Toronto General Hospital and Toronto Western Hospital, which along with Princess Margaret Hospital, and Toronto Rehabilitation Institute comprise University Health Network (UHN).  Canadian Charitable Business Org. No: 12386 4068 RR0001

About Adaptive Canuck ALS Foundation?
We are Canadian Families living with ALS. We lead, build teams, fund research, & work towards a cure. Adaptive Canuck ALS Foundation was founded with an unbreakable commitment towards supporting and advancing ALS stem cell research that leads to accelerated approval for human treatment to Canadian PALS.  We are a not-for-profit federal corporation, which has applied to the Canada Revenue Agency to be a registered Charity.  Our founder, Jeffrey Perreault, was diagnosed with amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) in June 2014 at 32 yrs old. All current and future directors of the charity to be either: PALS, CALS, or FALS. 

PALS: Patient diagnosed with ALS
CALS: Caregivers of ALS patient
FALS: Family member of ALS patient



Who is Adaptive Canuck ALS Foundation?
We are Canadian Families living with ALS. Adaptive Canucks ALS Foundation receives and maintains a fund or funds and we apply all or part of the principal and income therefrom, from time to time, to charitable organizations that are also registered charities under the Income Tax Act (Canada) that are involved in research for the effective treatment and cure of amyotrophic lateral sclerosis (ALS).

We provide services required by persons with ALS, their families and caregivers to support the physical, mental and emotional well-being of persons with ALS.

Inaugural Year Fundraising Objective: Funds raised will be pledged to the Toronto Western Research Institute, a major teaching hospital of the University of Toronto. Leaders at Toronto Western Research Institute have made some incredible progress to potentially get an effective Stem-Cell protocol in human trials for PALS in Canada. please find research updates below

As far as I know, they are the only ones in the WORLD to be doing this particular kind of work. They have been able to non-surgically transplant stem cells that have been pre-differentiated into motor neurons-directly into the spinal cord. Again, NO SURGERY required and they can target precisely where in the spinal cord they want the cells to go. The results thus far have been breath taking. This is ground breaking, world leading technology!

Doctors and researchers are leading the charge to find a cure, but are in desperate need of funding. With your help, we can accelerate the treatment and cure for ALS from decades to years, save the lives of tens of thousands of people, and create a future where ALS isn't a fatal diagnosis. ALS is not incurable, its simply UNDERFUNDED.

Adaptive Canuck ALS Foundation was created to raise awareness / money for research to treat and cure ALS. We are dedicated to making 100% of the money we raise go directly towards Stem-Ctem Research in Canada and are working directly with organizations like the Toronto Western Research Institute.


THE STEM-CELL RESEARCH YOU ARE SUPPORTING: A breakthrough is inevitable. We are  100% focused!
updated: Aug 21, 2015

1. We have now successfully differentiated stem cells sourced from articular cartilage into motor neurons and we have, using MRI guided, focused Ultrasound techniques, non-surgically transplanted the cell into the spinal cord. The cells appear to form connections within the spinal cord and nicely integrate within the cord itself. In other experiments we have demonstrated that these cells are able to form neuromuscular connections with muscles fibbers in culture.

2. So far we have used stem cells harvested from rats and transplanted into mice as a proof of principal and we are submitting this work for publications this month.

3. We have fortunately cleared the letter of intent stage with the Weston Foundation (http://westonbraininstitute.ca) to Fund to fund this work and the full grant is due in mid-September with an announcement of successful grantees mid-November.

4. We are waiting on the ALS Canada grant (discovery grant) for an announcement in mid September (fingers crossed) so we have and will be applying for independent peer reviewed funds.

5. Any funds raised will go towards reagents, chemicals, the purchases and breeding of the mutant mice (ALS animal model), support for graduate students and technical staff.

Exciting times to say the least. Adaptive Canuck ALS Foundation is very proud to be a committed partner and source supporting this brilliant stem-cell research that holds significant hope!

So I ask you, Can you do me a huge favor and PLEASE FUND and SHARE my initiative to work with the Toronto Western Research Institute to accelerate approval of stem cell treatment for human ALS trials. 

I strongly believe that public and corporate interests exist in supporting funding for ALS stem-cell research in Canada.

Thank you from the bottom of my heart.
jeff

Note:  I am NOT requesting funds to help pay for my personal treatments, the costs associated with my mobility challenges or any other ALS-related expenses.  My wife and I are taking the mounting expenses on the chin like a champ.  Your donation will go directly towards funding ALS stem-cell research in Canada.

About me:

Founder
Jeffrey Perreault, born in Sudbury, Ontario, CA
Diagnosed June 2014 at 32 years old.

I get weaker every day. I notice something significantly different every week. Right now, I know it's a matter of days or weeks before I am bound to a wheelchair. I communicate via websites and talk into the computer to share with more people, doing my best to create more awareness. Because THERE WILL BE A BREAKTHROUGH, it will happen eventually, whether it's in my lifetime or not, we're going to fight for it every day!

I am proactive, young, I continue to fight! I can be a voice for those with ALS who longer don't.

Currently living in London, Ontario, with the love of my life, my wife, Brittney. She is a doctor, and is in her 4th year of a 5-year residency training program in Obstetrics & Gynecology. She is my ROCK, my #1 supporter and my best friend. She's also a helpful person to have when it comes to attempting to navigate the medical system, clinical trials, and medical journals, but this whole process has really demonstrated how complex the system is and the barriers that exist for ALS patients and their loved ones.

ALS is a neurological disease that attacks the motor neurons and leads to progressive muscle weakness. In my case, it started out in my hands, but has progressed to involve my arms, feet, and legs. ALS can eventually progress to the muscles that are needed for speech and swallowing, and even to the muscles needed for breathing, which is fatal. Currently, there is only ONE medication that is approved for treating ALS (riluzole) and even the evidence for its effectiveness is poor.

8 years ago I started having some muscle twitching (fasciculations). I saw a few doctors, who ran a few tests, but since I was not having any other symptoms (such as weakness, tingling, etc), they all said it was benign. For a long time you don't know whats wrong with you. It wasn't until early in 2014 that I noticed some weakness and muscle atrophy in my hands. It started in my right hand but then moved to my left hand as well. I eventually went to the emergency department (because I didn't even have a family physician at that point), and was referred to the Urgent Neurology Clinic. They examined me, and my weakness and muscle atrophy was obvious to them as well. Doctors arranged for blood work, some imaging and an EMG and referred me to a Neurologist who specializes in Neuromuscular Diseases. So far, all of my tests had come back negative and so I eventually had a lumbar puncture done as well. Unfortunately, as one test after another came back, one diagnosis after another was excluded. As many of you know, what you end up being left with is a diagnosis largely of exclusion: Amyotrophic Lateral Sclerosis.

Today, 15 months after diagnosis, I no longer work. I lost all movement and strength in my hands and feet. Arm are next to go... I can no longer walk without assistance (walker, braces). Things do not get better from here. Unfortunately, physically everything goes downhill. Only stem-cells can provide hope. That's why I've dedicated the last year and the ones to come to ALS stem-cell research, collaboration and accelerated approval in humans.

I grew up in Sudbury, Ontario, Canada and spent the first 19 years of my life there. I attended Laurentian University & College Boreal. I graduated with a 3yr BA in Economics and 2 yr Diploma in International Commerce. In 2003, I started my career in investment banking but would immediately find a fonder interest in marketing and would end up working in Montreal for 4 years at Canada's largest distributor of consumer goods. In 2007, I moved back to Sudbury and co-founded Media Environmental Inc.

Media Environmental Inc. is a mine service contractor; a prominent substrate conditioning company that specializes in maintenance, and reliability of mining equipment. Serving the largest miners ‘Sodawash’ is Media’s flagship approach and process. Sodawash is an innovative conditioning/washing phenomenon (using baking soda) that enhances the productivity of mobile and fixed assets, as well as adding significant value and savings to the overall mining process. Visit www.mediasodawash.ca Over the past 8 years, Media Environmental has grown substantially, including contracts across Canada ranging from mining equipment to fire restoration. We were in the process of expanding internationally when I was diagnosed with ALS.

As I mentioned, I grew up in Sudbury, Ontario and the majority of my family still lives in the area, including my parents. I have one sibling, who is married and is busy with two children, my niece and nephew. As you can imagine, everyone is super supportive, but a diagnosis like this can put a lot of strain on a family.

Thank you to my family and friends who support my ALS initiatives.

Sincerely,



Jeffrey Perreault
Adaptive Canuck ALS Foundation. Inc
ALS Diagnosis June 2014
DOB: Nov 9th 1981
Media Environmental Inc.
www.mediasodawash.ca
www.alscanuck.org

Organiser

Jeff Perreault
Organiser
Downtown Toronto, ON

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