Research Conference Highlights
THE NEWSLETTER OF TUBEROUS SCLEROSIS CANADA
Happy Holidays The International Tuberous Sclerosis
Complex Conference held in
Bloomingdale, Ill., in September
Although tubers and other obvious
manifestations in TSC, CANADA such as
T UBEROUS SCLEROSIS SCLÉROSE TUBÉREUSE
tubers, SENS, SEGTs, and epilepsy.
She discussed the treatment of
changes in the brains of people
from all of us at TS CANADA! Thank you for all of your support this past year! was very informative about the latest with TSC have traditionally been intractable epilepsy, which occurs in
research developments in TSC. Much thought to be the cause of some two-thirds of cases, and highlighted
progress is being made in scientists’ of the symptoms of TSC, such as her clinic’s version of the ketogenic
understanding of the biology and cognitive delay and epilepsy, recent diet, called the “low-glycemic index
TSC CLINIC Ste-Justine Hospital - Montreal Que (514) 345-4894 mechanisms of TSC, although there research suggests that tubers do not treatment.” It has had success in
is still much to learn. Here are some tell the whole story. Microscopic treating intractable seizures, and is
highlights: changes and abnormalities, as easier to manage than the traditional
ketogenic diet. The need for more
Thank you Valerie Carey Community Living Guelph Wellington well as molecular changes, may
Rapamycin:. be responsible for some of the targeted epilepsy treatments, specific
Citizens All Association Allen Fahselt
Clinicians reported on the results manifestations of TSC. Dr. Arnold to TSC, was highlighted by Dr.
Angelo Cofini Guylaine Brouillette
of rapamycin trials that are ongoing Michael Wong, who has developed a
to those who have recently Conelco Utility Contractors Susan Spence - Children’s Integration Kristof, a Canadian researcher from
Gian & Sabrina D’Angelo Support Services in sites across the world. This drug McGill whose work is supported in mouse model to test various targeted
contributed to TS Canada! Steve & Claudia Fabiano Robert & Gail Gordon continues to show promise, and part by TSC Canada, presented his therapies that do not just suppress
Paul & Margaret Fairfield Eleanor Lyons larger-scale trails are underway. laboratory’s findings on the mTOR epilepsy, but may actually treat it.
Carole & Donald Clarke Bernice & Craig Floyd Steve Brown Significantly, rapamycin treatment pathway, which suggests that this
United Way Centraide Ottawa Karen and Lyle Shulist Jim & Sondra Gilbert has been shown to shrink tumours, not process—important in tuberous Kidney Involvement:
Lise & Gunther Kunzelmann Phyllis Halteman Mary Reid kill them. In some ways, rapamycin Dr. John Bissler reported on the
sclerosis—takes place within (not just
Ms. Teruko Imai Lorraine Lamoureux Bob & Marilynn Krause has a protective effect on the tumours outside) cell nuclei. The finding could differences seen in TSC related kidney
Uxbridge Nurseries Limited Stephen & Brenda Lance Carrie & Mike Latendre
in TSC, which is why tumours often have very significant implications for manifestations, compared to kidney
Louise & Anthony Erhart Magnum Auto Parts Colleen & Rob Hughes
grow back after treatment ends. understanding and treating TSC. disease seen in other syndromes.
Corrie Eerkes Robert Argiropoulos & Margherita Lanzil- Eunice Wright
lotta Flora Seul-Jacklein Although very promising, this was Conventional imaging techniques may
Dr. Kathleen Norman
Tony & Rose Shulist Karen McDonald Mark & Cindy Fairs a reminder that rapamycin is not a Epilepsy: not be sufficient to see a TSC kidney
Joan & Dave Hopkins Giuliana & Bruno Memme Anna Gross cure, and scientists continue to look Dr. Elizabeth Thiele, a neurologist, and its possible abnormalities.
Simon & Louise Cheung Raceway Chrysler Dodge Jeep Sprinter Mr. & Mrs. Gerald Takach for other drugs and treatments. spoke about some of the neurological Continued on page 2
R. Renshaw Rob & Jennifer Renzetti Christine Farquhar-Kay
Sandra Maher Simone Construction Limited Marilyn Durant
Tom & Georgina Minnes Attn: Paul & Michelle John Keenan
Nick & Nathlia Dmitrenko John Spinelli Marcia & Rob Guertin
Kathy & Frank Pascuzzo Glenn Slott United Way - Calgary & Area
Mr. R.A. Wylie Andrea Vento - Catherine MacNaughton TSC Canada
Lorraine Clark Vista Auto Group Inc. United Way - Cagary & Area 28 McGregor Drive
Mark & Liana Cacian Nico Vitucci - Don Ratcliff Ajax, ON L1T 3W8
Pauline Irving Rocky & Rita Vitucci Marisa Lozzo-Lohrum
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Cory Ham Harry & Janet Worsley David Schwartz (Barrister & Solicitor)
Charles & Glenda Thompson WR Property Services Inc. SD & G Developmental Services Centre
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Rodger & Sheri Campbell John Bochnovic Annette Lemon
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Franca Angeli H. Doreen Blight Lucinda Hage
Mark & Rosanna Bagatto Brian Shulist Ralph & Sue DeSanto
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Cancian Construction Ltd. Mark Cancian John Worsley Pensioners Charity Trust
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T UBEROUS SCLEROSIS SCLÉROSE TU
Address: ___________________________________________________________________________________________________________________ www.tscanada.ca December 2009 Volume 1 Issue 3
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PATriCiA nolAn director
T UBEROUS SCLEROSIS SCLÉROSE TUBÉREUSE
CANADA rAy MArCo director
nl Taryn Stone
Reminder: Give to
TSC Canada this holiday
T UBEROUS SCLEROSIS SCLÉROSE TUBÉREUSE ued support!
Jennifer flinn director
We need your contin
TSC Newsletter Dec09.indd 2-3 12/2/09 3:37:30 PM
CONNECTIONS Be open and proactive
when advocating for your
A Ketogenic Holiday!
By Craig Anderson On the other hand, Flinn says that in a number of cases teachers Christmas Cookies Keto Chocolate Candy
failed to notice some learning difficulties unique to TSC, and that
Openness and a willingness to be resulted in slower progress for the children. For example, some 50 kcals, 4:1
proactive are two key strategies children with TSC who test at the same cognitive level as their (provided by Beth Zupec-Kania)
(or mix of ground almonds and ketocal)
for parents who have children peers might nevertheless have issues around language receptivity,
Coconut oil or butter
with TSC attending grade school, written work and fine motor skills, and sometimes educators did 2.0 gm Hershey’s Cocoa
(using butter will make them more crumbly)
says Jennifer Flinn, an Ottawa- not immediately recognize these issue. That’s another reason why (unsweetened cocoa for baking)
area educator and author of a the possible effects of TSC should be communicated thoroughly 6.0 gm Butter
master’s thesis focusing on the and regularly by parents. Liquid Saccharine sweetener
Pinch of mixed spice
educational experiences of 10
Soften butter at room temperature.
families in Canada and the United States. “All information is important.” Mix all the ingredients together until they are well
combined. Divide into the number of cookies you With the back of a metal spoon, mix cocoa
Flinn, a Grade One teacher at Our Lady of Fatima in Ottawa, began Flinn faced her own learning curve three years ago when her want, put them onto baking parchment on a baking powder into butter.
the thesis project—entitled “The Educational Impacts of Tuberous daughter, Katie, who was born with TSC. In her teaching career tray and bake for 10 minutes at about 180°C.
Sclerosis Complex”—out of a hope to shed light on the various before then, she says, she had little contact with children who Stir in 10 drops of liquid saccharine sweetener.
educational challenges children with TSC might experience. The have the disease. Katie’s birth was a transformative moment in Some of the fat WILL seep out. Don’t worry. Leave them
Use a spatula to form the mixture into 1 or
research area, she says, remains largely unexamined. In addition to her own career. on the baking parchment to cool and move them gently
2 mounds onto waxed paper.
providing greater insight into the complex negotiating process that back and forth to absorb the fat back in.
often typifies the grade school experience for children who have TSC, Even though she is a proponent of continual parental engagement Freeze until firm.
When they are completely cool, wrap in small
it also underscored the importance of consistent parental advocacy. and vigilance, Flinn says that one must also be patient during the
process, and most importantly, avoid letting anxiety reign. squares of foil and freeze in sealed freezer bag. Serve cold to maintain firmness
“I really advise parents to give as much info as possible, and to be You can have different flavors if you want to use
upfront with teachers,” says Flinn. “All children with TSC are different. Some other sugar free flavorings and essences.
That means parents must also educate themselves thoroughly, function fine, some have difficulty with only For example, you can calculate in some cocoa
one area. Be on top of things, yes, but you powder and also use come orange essence for
know and assert their child’s rights, and continue to search for
a ‘chocolate orange’ cookie!
ways to maximize available resources within schools. One example shouldn’t worry too much in advance.”
is accessing modified education programs such as Individual
Education Plans, or IEPs.
“The big thing is for parents to be strong
advocates—and for that, there has to be for successful fund-raising events,
good communication between parents and teachers.”
Continued from Page 1 focus on entertainment
Flinn also encourages parents to have their children undergo
psychological educational tests, despite the often egregious waiting personal speech, underlining the objective. During the speech, says
Early Treatment: By Craig Anderson
times involved. Parents, she adds, should strive to explore all of Ekelund, she would stress the monetary goals that organizers were
Dr. Sergiusz Jozwiak spoke about his technique for
the resources in place in specific schools, such as occupational Keep it light, simple and, most importantly, fun. hoping to achieve.
and speech therapy. And she advises the continual sharing of CANADA
treating infants and children diagnosed in utero or
shortly after birth. Since more and more cases of TSC Another strategy Ekelund suggests is to hold the event prior to a
information and close contact. T UBEROUS SCLEROSIS SCLÉROSE TUBÉREUSE Those are what Carmen Ekelund, who has organized fund-raising
are being detected in utero with late-term ultrasounds, evenings in downtown Vancouver for TS Canada over the past four statutory holiday, so that invitees are more likely to attend. Second,
Dr. Jozwiak and his team routinely perform EEGs on years, says are the keys to successful and lucrative events. she stresses keeping the date of the event on the same day every year,
“There are a lot of supports in place.” these infants at six-week intervals. This way, they can in order to maintain buzz and create a mental association between the
treat for infantile spasms prophylactically as soon as Ekelund estimates that she has raised over $60,000 for TS research event and the day.
For her thesis, completed in May for the Education Department at over that time period. Successful fundraising, she says, begins first
abnormal brain activity appears, instead of waiting for
the University of Western Ontario, Flinn interviewed 10 families with networking within one’s immediate community, with sympathetic Reflecting on past events, Ekelund says that by including a silent
clinical seizures to develop. He suggests that by doing friends and family. Another important step is to spread the word in the auction she was able to raise a lot more money. The key to this strategy,
with children attending grades one through eight, living in places
this, many cases of autism and severe developmental workplace; in particular, by providing information about the event, its though, is to offer people quality items.
as diverse as Alberta, Ontario, Virginia and Georgia. The children
delay can potentially be prevented. purpose, and how, for example, TS affects children and their families.
in her case study had a wide range of cognitive functioning; some
“You can’t do a silent auction with junk,” she says.
were in supported systems and others participated in the regular
LAM: But it is the type of event, says Ekelund, that can make the real
academic program. She says she was pleasantly surprised that so difference. She explains that she began by having sit-down dinners Her auctions featured items such as expensive bottles of wine, tickets
Dr. Elizabeth Henske discussed the latest developments
many of the families she talked to had had positive things to say with a fixed entry fee, but shifted her approach to one that involved a to Vancouver Canucks games and gift certificates to specialty stores.
in the understanding of LAM, a lung disease that occurs
about the supports available to their kids. cocktail reception, featuring a jazz band and a silent auction. Ekelund Ekelund says that at one event she raised more than $9,000 on the
in approximately 30% of women with TSC. Although
also tried to avoid the tendency to bombard people with information. silent auction alone.
Besides family interviews, Flinn also spoke with eachers and traditionally categorized as benign, the cells that give
rise to LAM can originate from a single abnormal cell, Ekelund was drawn to fundraising due to her own experience as the
educational assistants, and she reports a strong desire among
and can migrate from different areas of the body.
“A mingling atmosphere is better than a
respondents to ensure each student received the most appropriate mother of Taylor, aged 12, whom she says is “horribly affected” by
sit-down visit, I want it to be fun; I don’t want to TSC. So Ekelund demands that money raised at these events go towards
supports available. Teachers, she says, were typically receptive –to It is encouraging to see all the wonderful research
working closely with parents—a spirit of collaboration prevailed. currently being done to understand and treat TSC. It
see a two-hour video.” research.
is certainly an exciting time for TSC research, and Ekelund also avoided what she considers a passé approach by printing “People need to know what it is like for her to live like this,” she says.
“Their primary goal was to help the child,” she says, noting that
hopeful for all those affected! “menus” for the event that feature a selection of meals and drinks on “She didn’t choose it. It’s important for people and other parents to know
teachers in her study relied heavily on parents for additional
one side, with a brief synopsis of tuberous sclerosis and its diagnostic your plight. The more people know about it, the more compassionate
information about TSC. they are going to be.”
For more from the international research conference, features on the other. She would typically cap the event with a brief
go to www.tscanada.ca.
T UBEROUS SCLEROSIS SCLÉROSE TUBÉREUSE
TSC Newsletter Dec09.indd 4-5 12/2/09 3:37:32 PM