Friends in The Hive


Just as it takes a village to raise a child, it takes a community to support a little girl through an unthinkable journey. This page is a tribute to some of Sophie’s friends worldwide who are supporting her and our family, as we join together in the search for a cure.


Vicky: Sophie’s EA Vicky is a very kind and important guiding influence on Soph. We’ve started working with her this year, and she has brought great energy and diligence to make sure that Soph has the discipline in her day to stretch her abilities, and also have fun. She has had such an impact on our lives and is likely one of the primary reasons that Sophie likes school so much (together with Mrs. Boon, her teacher). She also pushes us as parents – having your child work with another professional gives you new insight into their abilities and she works with us to constantly adjust Soph’s program.


Excel Fitness: Dana Robinson and Nancy Altenburg from Excel Fitness have teamed up to help us sweat for the cause. For four weeks, they ran fitness classes in Dana’s studio to raise money for the research. Their generous commitment was highlighted in the local paper, and was another reason why we feel so fortunate to be part of our community.


Rob Segovia: Rob has been one of our biggest supporters from the outset.  This site is the result of the generous donation of his time and it reflects the quality with which he pursues all things graphic. We’re very lucky to have such good friends that are as expert as Rob and his team at Segovia Design. This site works because of the time and diligence that he puts into this, often in the middle of a busy day. Rob doesn’t want credit for this but we insisted on including him. He’s played such an important part in our ability to raise money for Sanfilippo research. We can’t thank you enough Rob.


corriebosCorrie Bos
is a part of the Strathroy Ontario Canadian Tire supporters of Strides for Sophie. Her amazing efforts in the sale of Sophie Bee pins has resulted in thousands of dollars being raised for research. For many months, she has taken nearly every day off that she has had to sell Sophie Bee pins outside of Canadian Tire to strangers to raise funds. We can’t thank Corrie enough for being such an important part of our Strides for Sophie.


Katie Hicks & Her Team
Cousin Katie from Ottawa, Ontario has taken the lead in collecting gently used baby clothes and toys to sell on consignment to raise research dollars. Thanks to everyone who’s donated, and especially to all who are involved in sorting, pricing, sizing, and selling the many beautiful – and profitable! – items.


Stratford_footballStratford City Football Club
is the elite soccer club in Sophie’s new home town. Team coach Kenny Murphy has become a fast friend and supporter, and SCFC is now the most public face of Strides. The guys have adopted Strides for Sophie as their own, and have worn “Strides for” on their chest with pride all season. We’ll not walk alone – go Reds!


Dennis Dussin and his wife April 
have been strong supporters since day one. Between getting donations from his company’s suppliers, organizing tables for Sanfilippo gala, or running in marathon, he has played an important part in raising awareness among our community of friends.


DussinThe Tattersall Family
have been generous and enthusiastic supporters. Those of you that have been to the Spring Sanfillipo gala may recognize him from his annual enthusiastic (and invariably winning) bids in the auction. Runners will recognize him for having the most eye-grabbing bee costume around.


Sam Tattersall
The son of Tim and Nat, and proud brother to Margot, Sam regularly donates birthday monies to the Sanfilippo Children’s Research Foundation. His generosity as a young leader in Sophie’s cause touches all of us.  He also looks pretty stunning as a bee…


TattersallCanadian Tire Crew
Sophie’s Nana’s post-retirement career at Canadian Tire in Strathroy, Ontario has lead to some amazing friendships and incredible team support. The entire store raised funds for our 2010 run, and they were represented in Toronto by an exuberant team of walkers and cheerleaders! Decked out in full bee regalia, they rose at dawn, braved a 2 ½ hour commute, and were the first at the starting line to welcome the team. Carl, Denise, Giulio, Ivan, Katrina, Renene, Tammy & Warren – your “Know I Can!” spirit has been an inspiration to us all!

02_unclewarren“Uncle” Warren
There are simply not enough words for the contribution Warren MacDonald has made to Strides for Sophie. From exuberant rallying of the Canadian Tire troupes, to Christmas fundraising for the cause, to the sourcing and sale of fundraising “Bee Pins”. If you would like to purchase a pin to show your support, contact and we can put you in touch with Sophie’s real-world Guardian Angel.


Tammy & Darryl Johnstone
Organizers and hosts of the 2013 Songs for Sophie fundraiser held in Mount Brydges, Ontario, Tammy and Darryl have been with us from the start.  From runs to garage sales to backyard concerts, they are tireless fighters for the cause. Thanks to all the friends, family and neighbors who joined Figure Four on May 19, 2013 to celebrate life.


Sara Tweedie, Craig Lindsay & The Chandisherry Foundation
Incredible supporters since day one, the entire Tweedie / Lindsay / Chandisherry team has been fastidious in their care and concern for Sophie’s future.  Each and every dollar donated is appreciated, and the love and support shown by all are incredible.

03_thesimplybarWellness Foods- Called to the Bar!
When Wellness Foods (the geniuses behind the Simply Bar) get behind an idea, they really get behind it. Cathy Richards, the President and Founder of Wellness Foods, heard of Strides for Sophie and decided that she needed to mobilize the whole company to help out. Not only did they donate free bars to all Strides runners who participated in the 2010 Scotiabank marathon, they also turned out en masse to the run to support the event and fundraise. Their enthusiasm was contagious, and their low-cal yet high-protein support of the event won over more than a few supporters!


Paul and Debbie Cropley
Owners of Canadian Tire in Strathroy, Ontario, the Cropley’s have been supporters of Strides for Sophie since day one. They have matched employee donations for funds raised, allowed customer fundraising at  the store and donated to the Silent Auction of the annual Sanfilippo Childrens’ Research Foundation Gala in Toronto. The generosity of the Cropleys and entire Canadian Tire Team cannot be overstated!


Dave and Suzie Ellis
Dave and Suzie Ellis have been remarkable supporters from day one.  Suzie, who teaches elementary school, started a fund-raising program at her school the first year that she heard of Sophie’s condition without asking mentioning it to anyone. Dave and Suzie’s generosity continued when they made the largest ever single donation to Sanfilippo Children’s Research Foundation on behalf of Strides for Sophie. Their modesty and generosity have been an inspiration and have perceptibly impacted the course of research into this disease.

04_cahillclanThe Head / Cahill Clan in Melbourne
Lynton and Liss are proud parents of Mimi, James Thomas and Angel Stella and they have been strong supporters from the moment that they learned of Sophie’s diagnosis. In the fall of 2010 Lynton felt compelled to hop on a bike and ride 200 kms to support Strides. Their generous support from the other side of the world is making a difference by funding research and inspiring our imaginations. Their inspiration makes Australia seem right next door.


Mrs. Carlow and Mrs. Flanagan
As Sophie’s kindergarten teacher and assistant, Mrs. Carlow and Mrs. Flanagan play an extremely important role in Sophie’s life every day. They, and the teams at Romeo Public School and the Avon-Maitland District School Board, have provided the love and patience that Sophie needs. They have also been strong advocates for assistance including communication tools, adapted tools and even a customized trike to help her muscle development. Their strength, kindness and patience inspire Sophie’s parents and classmates, and make her life better day that she is at school.

05_clothiermacdonaldThe Clothier / Macdonalds in Halifax
Craig and Sue have been rocks of support despite the miles between us. Upon hearing of Sophie’s diagnosis, they immediately started fundraising with her soccer team. Then, they nominated Sue to come run the half-marathon with us to support Strides while Craig took care of their 3 wonderful kids at home. Their passion and enthusiasm are infectious. So infectious, that they got people around the world to help including a very generous friend from Europe. Sue and Craig inspire us all with their big hearts and generosity.

HannahWillHannah and Will are soon-to-be 3 year old twins living in Montclair, New Jersey. Their mommy Sara met Sophie’s parents Sarah and Tom when they attended University together in London, Ontario. Hannah and Will and their parents Sara and Jerry aren’t able to participate in this year’s Toronto Marathon, but have decided instead to raise funds as part of their upcoming big-kid birthday extravaganza. Instead of gifts, everyone who loves Hannah and Will are being asked to donate to “Strides for Sophie”. With their help, we look forward to making a meaningful contribution to the research dedicated towards finding a cure for Sanfilippo Syndrome.

GraceGrace is Sophie’s big sister by 18 months. Best-buddies in everything they do, Sophie can be seen cheering wildly from the sidelines as Grace works on kicking anything that moves on the soccer field. In return, Grace is supporting Sophie by walking 5 kms for Sanfilippo research at the upcoming Toronto Marathon.


Holly has known Sophie’s mum for too many years to count. Best friends since University, she was touched deeply by the news of Sophie’s condition. Eager to make a significant contribution to the cause, Holly and her amazing organizing committee joined together to host “Fancy in the City” on August 25, 2010. Conceived to celebrate proud and wonderful women everywhere, the event featured inspirational speakers, a seriously competitive silent auction, and raised an amazing $6,500 for Sanfilippo research! Thanks to absolutely everyone who was involved!


Lynn & Martin went above and beyond in donating the entire proceeds of their Retirement Yard Sale to Strides for Sophie and the SCRF. As great aunt and uncle to Sophie, they were particularly upset when learning of her condition. Having recently retired and in the process of downsizing their home, they knew the many things they no longer needed could be turned into dollars for a cause! On July 17, 2010 they hosted a yard sale in Renfrew, Ontario and donated 100% of the sale income to the SCRF and the medical research it supports – a true community effort, thanks to everyone who was involved!

PaulPaul is Sophie’s maternal Grandfather. Better known as “Pop” to his two doting Granddaughters, at age 63 he’s the most seasoned of the ½ Marathoners joining the 2010 Strides for Sophie team. Having once walked 32 miles as part of a community event in his native England, Pop’s recreating part of his boyhood trek as a Grandfather committed to making a difference.


Dr. Julian Raiman is Sophie’s metabolic specialist at Toronto’s Hospital for Sick Children. Faced with the unenviable task of travelling with families through a range of devastating childhood conditions, Dr. Raiman remains constantly positive and hopeful for a cure. Having travelled to Adelaide, Australia for the 11th International Symposium on MPS and Related Diseased in June 2010, Dr. Raiman is constantly on the search for the most current treatments and cures. He has assisted our family in importing a concentrated soy substrate more commonly known as genistein with the hopes that this may mute or delay the onset of her symptoms, and works tirelessly to remain positive that a treatment or cure will one day be found.