Jordan Topor
Jordan Topor has raised approximately $500,000 for the MS Society and MS research in the lab of Dr. Jack Antel with his 鈥淕rip鈥橬鈥橰ip鈥� golf tournaments, MS walks, poker tournaments and a 36-hour-Guinness World Record online hockey game. His volunteering helped pay for two high-powered microscopes that enhance our capacity to analyze the properties of myelin-producing cells under injury conditions in response to potential therapeutic agents.
Jordan and his family began fundraising for MS after his mother was diagnosed with the disease. He was happy to see the physical devices that are now contributing to the cause about which he is so passionate.
鈥淢ost of the time when you raise money for charity you know that you are doing a great thing and that the money will go to great use, however you rarely get to see exactly where your money went,鈥� he says. 鈥淭o know that this microscope was bought and will directly help speed up the process to finding a cure is an amazing thing to see.鈥�
鈥淢y mom is my hero and definitely the toughest person that I know. Her strength and determination are an inspiration to everyone who has had the pleasure to meet her and those that have the pleasure to call her a friend. My mom always says 鈥業 may have MS, but MS doesn't have me yet.鈥欌��
Jordan feels neurological disease does not get the attention it deserves. He is glad to help The Neuro research MS with the goal of finding better treatments and one day, a cure.
鈥淎nyone that I have met that works for The Neuro has been great,鈥� he says. 鈥淭hey are all kind-hearted and selfless human beings. I like to call these types of people 鈥榯he good guys鈥欌��.
Ellen Wolfe
Ellen Wolfe volunteered on the A Brilliant Night committee in 2016 is on the current committee for 2017. 听A Brilliant Night raises money for Dr. Kevin Petrecca鈥檚 Brain Tumour Research Centre. She wanted to help patients who go through this devastating diagnosis live longer with a better quality of life.
鈥淚 was inspired to volunteer for The Neuro because of the excellent and compassionate care that my late husband received after being diagnosed with a brain tumour in 2012. 听Dr. Petrecca and his team, and everyone that we met at The Neuro during 13 months of tests, treatments and two surgeries treated us like family. I felt the need to give back and be apart of the amazing work that the staff at The Neuro do.鈥�
A Brilliant Night has been Ellen鈥檚 first experience with fundraising and she says it鈥檚 rewarding knowing her work will directly contribute to helping people with brain cancer.
鈥淚 encourage anyone who wants to volunteer for The Neuro to do so in whatever capacity,鈥� she says. 鈥淚t gives you the opportunity to change and help people鈥檚 lives including your own, by helping people who might otherwise not be able to help themselves. 听It also gives you the satisfaction of knowing that you are supporting the people who work so hard everyday to help their patients lead their best lives possible.鈥�
Josie Acrobelli
Josie Arcobelli was inspired to volunteer after she was diagnosed with a meningioma brain tumour in November 2013 and became a patient of Dr. Kevin Petrecca, a neurosurgeon at the Montreal Neurological Institute and Hospital. She put together a team called Brain Matters. They host a raffle with all proceeds going to support Dr. Petrecca鈥檚 Brain Tumour Research Centre.
鈥淚 cannot say thank you enough for what Dr. Petrecca and his team have done to lead me towards my recovery, so this is simply my way to demonstrate my tremendous gratitude,鈥� she says. 鈥淚t truly feels wonderful to be able to give back in any way I can to help a cause that is so dear to my heart. During my difficult time Dr. Petrecca and his team were always by my side, dedicated to help me move forward. I feel honored and blessed to be able to contribute and help them back in return.鈥�
Josie says she would recommend volunteering to anyone who wants to make a positive impact in the lives of others.
鈥淰olunteering for such a great cause allows people to support and give back to the community in the easiest way,鈥� she says. 鈥淏y volunteering at this hospital, I have learned and experienced first hand how truly dedicated and compassionate everyone involved is to helping the patients see a better tomorrow.鈥�
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In their own words ...
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Danielle Lepage
I started fundraising to help the sensory neuropathy research of Dr. Bernard Brais in 2009. I rolled up my sleeves and collected money for the cause, and I organized an annual benefit dinner, because I wanted to create change and give the hope of recovery to young people who are affected by this disease.
I wanted to break the taboos and prejudices around sensory neuropathy, as well as the isolation patients often face, while raising awareness about this devastating and debilitating disease.
I myself have sensory neuropathy, and I always felt at home at The Neuro during my appointments with Dr. Brais, who is a very good man, and this encouraged me to become a volunteer. The entire staff of The Neuro work with professionalism and are very friendly. They treat people with humanity and their kindness is very touching. I loved The Neuro and the people who work there, so I decided to devote my energy, my time, and my heart to the cause.
During the first dinner we had an artist come and held a silent auction. It was a big success, so I decided to make it an annual thing. Sadly, since 2016 I no longer run the dinner because of my deteriorating health, but I still fundraise for the cause. This is my ninth year fundraising, and I have raised $227,204.01 for Dr.Brais鈥� research so far. We are going to try to raise even more money to continue to support his research in the hopes that they will soon find a cure. I want youth who suffer from this disease to achieve their dreams. This is why I鈥檝e helped for these past nine years.
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Mario听DiCarlo
I'm the co-chair of the Users鈥� Committee听of the Neuro,听Vice President of听the听Friends of the Neuro, and many other roles
I鈥檓 a past and current patient at the Neuro and MUHC, I started getting involved with the Neuro about 10 years ago with a self-management initiative called My Tool Box, aimed at helping people with chronic diseases.
I鈥檓 still involved with the Neuro because of the trust that I have for the organization 鈥� the fact that if I bring any ideas to the table, they are听taken seriously, I鈥檓 being heard, and I can help bring results.听
To put it simply, the Neuro is like a family: it鈥檚 one of the smaller groups within the MUHC, and it鈥檚 very hands-on, as in,听attempting to resolve听issues on the spot.
It鈥檚 easy to communicate with the administration, and there鈥檚 a feeling of collaboration here that perhaps you wouldn鈥檛 find at many hospitals.
Going forward, one of my priorities is increasing patient engagement.听Namely,听having patients听collaborate听as co-leaders听in both clinical and research projects targeted at improving the patient experience. I think we can continue to achieve听this at the Neuro.
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Maria Mastracchio
I鈥檓 a former co-chair of the MUHC Users麓听Committee. 听Presently, I am President of the Friends of The Neuro.
I鈥檝e been dealing with multiple sclerosis from the age of 13, and I鈥檝e been at The Neuro for over 40 years as a patient, a volunteer, and a representative of other patients. It鈥檚 here that I鈥檝e been cared for by incredibly compassionate doctors and nurses, and it鈥檚 here that I鈥檝e made countless connections with administration, employees, volunteers, and patients alike.
One of my ongoing involvements is managing the services of Friends of the Neuro: we have a cart full of anything patients might need during their stay here 鈥� toiletries, slippers, and more. It鈥檚 a small service, but it鈥檚 one of the ways we try to serve all the needs of patients 鈥� not just the obvious ones. We want to provide quality, personable care鈥攖he kind of care you can鈥檛 find at just any institute. I鈥檝e recognized that, even in the age of high technology, it takes people to truly help people. Although my illness forced me to end my teaching career earlier, I鈥檝e never lost the desire to educate and empower.
These days, I try to help people understand the diagnosis they face and support them as they move through a system that can be hard to navigate at times. Of course, research is always a goal; I hope to contribute as much as I can to research, and I hope others will, too.
(In photo she is seated, to the right of Carmelle Charest, a volunteer with Friends of the Neuro)
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