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                                                                                                                                                                                                                                                                                                                                                                                                                   CONNECTIONS
                                                                                                                                                                                                                                                                                                                                                                                                                   CONNECTIONS
                                                                                                                                                                                                                                                                                                                                                                                                                       THE NEWSLETTER OF TUBEROUS SCLEROSIS CANADA
                Happy Holidays                                                                                                                                                                                                                                             The International Tuberous Sclerosis
                                                                                                                                                                                                                                                                           Complex Conference held in
                                                                                                                                                                                                                                                                           Bloomingdale, Ill., in September
                                                                                                                                                                                                                                                                                                                    Understanding TSC:
                                                                                                                                                                                                                                                                                                                    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
               Art & Sylvia Walde                                                               Don & Elaine Winkler                                                            Jerry & Valerie Boettger                                                                                                                                                                                3880060
               Cory Ham                                                                         Harry & Janet Worsley                                                           David Schwartz (Barrister & Solicitor)
               Charles & Glenda Thompson                                                        WR Property Services Inc.                                                       SD & G Developmental Services Centre
               John & Betty Reimer                                                              Andres Wines                                                                    Bette Anne & Tom Chevalier
               T.J. Sutter                                                                      Ray & Cathy Marco                                                               Erinoakkids - Graziela Alexandria
               Rodger & Sheri Campbell                                                          John Bochnovic                                                                  Annette Lemon
               Peggy Yip Lam Yan                                                                Angela Hay                                                                      Dale Dyer
               Franca Angeli                                                                    H. Doreen Blight                                                                Lucinda Hage




                                                                                                                                                                                                                                                                  CANADA
               Mark & Rosanna Bagatto                                                           Brian Shulist                                                                   Ralph & Sue DeSanto
               Camelita & John Barbieri                                                         Cathy & Don Evanochko                                                           Ontario Power Generation Inc. Employees
               Cancian Construction Ltd. Mark Cancian                                           John Worsley                                                                    Pensioners Charity Trust
               Rosanne Cacian                                                                   Murray & Lorna Blight                                                           Andy & Carla Bergmann
                                                                                                Orin & Betty Thomassen                                                          Mr. & Mrs. J.F. Taylor




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                                                                                    T UBEROUS SCLEROSIS                                                                                                                                                                                                                                             SCLÉROSE TU
              Address: ___________________________________________________________________________________________________________________                                                                                                                                 www.tscanada.ca                                                                                                                        December 2009 Volume 1 Issue 3
              City/Prov/Postal Code:________________________________________________ Tel: _____________________________________________________
              Email: _____________________________________________________________________________________________________________________
                                                                                                                                                                                                                                                                                                                                     TS Canada Board Members           Provincial Contacts                          Newsletter Team
              In Memory Of: _______________________________________________________________________________________________________________
                                                                                                                                                                                                                                                                                                                                                                       bC Cindy fairs                               Joe Chidley
                                                                                                                                                                                                                                                                                                                                     Andrew duffy Treasuer             (250) 765-4419
              o I am unable to financially support TS Canada at this time, but I would like to receive the newsletter.                                                                                                                                                                                                                                                                                              Karen Shulist
                                                                                                                                                                                                                                                                                                                                                                                                                    Craig Anderson
                                                                                                                                                                                                                                                                                                                                     MAry ZilbA director               Ab Kathie ratcliff
              PLEASE DETACH AND RETURN TO TS CANADA, 92 CAPLAN AVE , SUITE 125, BARRIE, ON L4N 0Z7                                                                                                                                                                                                                                                                     (403) 932-6790
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                                                                                                                                                                                                                                                                                                                                     Joe Chidley director                                                           for feedback on the current
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                                                                                                                                                                                                                                            CANADA
                                                                                                                                                                                                                                T UBEROUS SCLEROSIS   SCLÉROSE TUBÉREUSE
                                                                                                                                                                                                                                                                                          CANADA                                     rAy MArCo director
                                                                                                                                                                                                                                                                                                                                                                       nl Taryn Stone
                                                                                                                                                                                                                                                                                                                                                                       (709) 782-2525
                                                                                                                                                                                                                                                                                                                                                                                                                            Reminder: Give to
                                                                                                                                                                                                                                                                                                                                                                                                                      TSC Canada this holiday
                                                                                                                                                                                                                                                                                                                                                                                                                                              season.
                                                                                                                                                                                                                                                                            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
CONNECTIONS                     Be open and proactive
                                when advocating for your
                                child’s education
                                                                                                                                                                                       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
                                                                                                                                                                                                                       Ground Almonds
                                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)
                                                                                                                                                                                                                       Egg
                                area educator and author of a                                           the possible effects of TSC should be communicated thoroughly                                                                                                            6.0 gm Butter
                                                                                                                                                                                                                       Desiccated coconut
                                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
      Winter 2009




                                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,
                                                                                                             TSC SUMMARY
                                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.

                                                                                                                                                                                                                                                                                                                                       CANADA
                                                                                                                                                                                                                                                                                                                           T UBEROUS SCLEROSIS   SCLÉROSE TUBÉREUSE




TSC Newsletter Dec09.indd 4-5                                                                                                                                                                                                                                                                                                             12/2/09 3:37:32 PM

				
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