CONNECTIONS

Newsletter of the Washington State Chapter of the Tourette Syndrome Association

Volume VI, Issue 3

September, 1999

So Much Accomplished, Yet So Much More To Do!

The Washington State TSA Board met in July to review the goals we set for our chapter last year and to set new ones for the coming year. Here’s a recap of what we accomplished last year:

1998-1999 Goals

Educate the Public

We did two in-services for the Seattle Police Department.
Several smaller newspapers did articles on chapter members living with TS.
We held three mini-conferences focusing on medical, school and adult issues.
An informational brochure on our chapter and TS was written and is soon to be printed.
We spoke with aides of several of our Congressional representatives in Washington, DC.
We set up our chapter’s own web site.

Build Our Organization

We increased our board membership to nine members.
We increased our annual income to close to $8000.
We started support groups in Seattle and Spokane and are investigating the possibility of one in Vancouver.
We printed t-shirts and held a bowl-a-thon as our first chapter fund raisers.

Educate the Educators

An in-service was presented to the Child Study and Treatment Center in Steilacoom.
We worked with the Office of the Superintendent of Public Instruction to complete the TS Care Plan for use in schools. It has been sent to each school district and is available by writing the editor of this newsletter or by visiting OSPI’s website, www.ospi.wednet.edu.
We staffed several special education resource fairs for parents and educators.
We secured a grant from the Schiff Foundation to enable us to prepare extensive packets of information on TS to be sent to 30 targeted school districts throughout the state.

In addition, we completed our Physician Referral List (which is constantly expanding); forged new or closer relationships with the Future Business Leaders of America, CHADD, various advocacy organizations for people with disabilities and other TS chapters; established a lending library; published this newsletter quarterly; and fielded many calls requesting information, referrals or support.

This coming year, we are setting our sights even higher. Here is what we’ve come up with:

1999-2000 Goals

Educate the Public

Investigate the possibility of a medical conference geared toward professionals in 2001.
Do in-services to the Tacoma Police Department and Child Protective Services. We are also investigating the possibility of an in-service at a state conference of sheriff departments.
Arrange to get PSA’s aired on one radio and television station during TSA awareness month next May.
Prepare an information packet for use in the religious communities.
Link our web site to library web sites in our state which serve over 100,000 people.
Distribute our new chapter informational brochure to physicians’ offices.

Member Services

Hold two mini-conferences a year which are lengthier than our current conferences.
Increase our board membership to 12 people and investigate the possibility of adding an advisory committee.
Hold an annual meeting with elections at our first mini-conference in 2000.
Increase our volunteer support base.
Add links to our web site of other web sites geared toward children, and start a semi-regular page in the newsletter devoted to kids.

Educate the Educators

Find out more about advocacy training taught by national TSA and recruit people to do in-service training.
Investigate the possibility of doing an educator’s conference in the next two years.
Send out informational packets to 30 school districts and secure funding for additional districts.
Work with the Future Business Leaders of America to do awareness programs in the schools.

Advocacy with Lawmakers

Give informational packets to selected legislators and arrange for in-person meetings.
Connect with other organizations that are aligned with us on various state and federal issues of importance to TS families.

This is a pretty ambitious agenda for a board of 9 members. We cannot accomplish these goals without volunteer help. Each of the goals can be broken up into a series of smaller tasks. Please take some time to think about whether you could help us accomplish a goal by giving of your time, talent or money. We are a much stronger organization when we have more active members. All the people who currently volunteer can vouch for the fact that you get back at least as much as you put into this group. Please contact any of the current board members if you can help us help others.

Board Members 1999-2000

President
Roseanne Torgerson, Seattle
322-4754
Treasurer
Carroll Frye, Puyallup
(253) 840-0254
Programs
Bill Zook, Seattle
(206) 367-4491

Awareness
Karen Sadewasser, Washougal
(360) 835-8731
Information Line
Meg Howard-Petosa, Seattle
(206) 781-9035
Newsletter Editor, Support Groups
Nanette Rosenthal, Seattle
(206) 367-4491
Web Site
Brad Hawkins, Marysville
(360) 652-6423
Special Projects
Brian Cahill, Issaquah
(425) 557-6770
Special Projects
Susan Yount, Seattle
(206) 522-2031

As you can see, we do not currently have a vice-president or secretary. We would also like to find board members who could be responsible for fund raising, legislative issues and membership issues. We will hold our first chapter elections in early 2000 and hope to find volunteers to fill these positions.

MAKE A DIFFERENCE

As we head into fall, the United Way and Combined Federal Campaigns will get underway. Contributions to the Washington State Chapter of TSA through these programs is an important source of income for our chapter. Last fiscal year, we saw an increase in the amount of United Way and CFC contributions for which we are most grateful. We are hoping that trend will continue this year. Your pledge will enable us to achieve the goals listed in the article above in the coming year. So please remember all the TS families in our state and be generous when it’s time to make your pledge. And don’t forget, your contributions are tax-deductible.

CHAPTER BROCHURE

Our chapter is currently creating an informational brochure on TS, its associated disorders and our chapter services. Printing services have been generously donated by PDQ Printers/Lithographers in Bellevue. We hope to be able to use this brochure to get the word out about TS in general and our chapter in particular. We will be distributing it to libraries, doctors’ offices and schools among other places. If you are able to help hand out some brochures in your area of the state, please let the editor know.

SCHOOL NEWS

FUNCTIONAL BEHAVIORAL ASSESSMENTS

When Congress reauthorized the Individuals with Disabilities Education Act (IDEA) in June 1997, there was a great deal of discussion about discipline and behavior of children with disabilities. Advocates were successful in protecting the rights of children with disabilities from being suspended and expelled for exhibiting behavior that was related to their disability, behavior that they could not control; while also protecting all children from harm. The emphasis in the new law is to deal with the behavior, find out what circumstances led to the child’s problem behavior, and figure out a way to prevent it in the future so that the business of education can continue. Congress realized that when children are out of school they are not learning. They are especially not learning how to get along with their schoolmates and teachers and how to be productive, socially adept adults.

So what is a “Functional Behavioral Assessment?” Sections 614 and 615 of IDEA mention the term “functional behavioral assessment.” It means we need to figure out the “function” of the behavior. What is the purpose of the student behaving this way? What is the behavior communicating? Why is he doing it? How often does it happen? What happened earlier in the day that may have affected the student? What is the response of others to the behavior?

In order to improve behavior and develop behavior support plans these questions must first be answered. A functional behavioral assessment can be formal or informal, including observing the behavior where it happens, talking with parents and teachers and, of course, the student himself. If the student has behavior issues that get in the way of his learning, a functional assessment of behavior should be included in his evaluation plan. The IDEA is aimed at prevention, eliminating problems before they happen with more effective programming.

Positive behavioral support strategies, to encourage changes in behavior, might include: Teaching new skills (better ways to achieve the same result - example: getting attention) Appreciating positive behavior (using what was learned during the functional assessment about what the person views as rewards - they may not be what we expect) Changing the environment (organize the environment for success) Devising a plan to record what works and what doesn’t Plan on how to respond to a crisis before it happens

Reprinted from Innovation -CISE and families & Disability Newsletter, Beach Center on Families and Disability, and Parent to Parent MPACT newsletter, February 1998.

Editor’s Note: Parents need to ask for a functional behavioral assessment when it’s appropriate. Don’t assume that the school will offer this as a solution. It is still a fairly new concept and is counter to what many teachers have been taught to address discipline problems. The Beach Center on Families & Disability is a research and training center on positive behavioral support affiliated with the University of Kansas. They have been helping schools and parents develop positive supports long before the concept of a functional behavioral assessment was included in the IDEA.

MEDICAL NEWS

Stem Cell Research
Within the last year, scientists have successfully isolated and cultured human pluripotent stem cells. Stem cells have the ability to divide without limit and to give rise to specialized cells. As opposed to a totipotent cell which has the capacity to form an entire human being, pluripotent stem cells are capable of giving rise to most, but not all, tissues of a human, including brain cells. This has been exciting news for people with neurological disorders or diseases, because research is showing that the brain is actually capable of changing and being repaired, a concept that was unthinkable just a few years ago. Brain stem cells find their way to areas of the brain with damaged cells and through some chemical language as yet unknown to researchers, they check out existing cells, replacing diseased ones with healthy ones. There are already a handful of people who have received brain stem cells to repair damage from Parkinson’s and Huntington’s disease with promising results. Doctors believe many mental disorders may benefit from this as well.

The Tourette Syndrome Association is part of an alliance called CURe (Patients’ Coalition for Urgent Research). Some other members are the Juvenile Diabetes Foundation, Parkinson’s Action Network, Kidney Cancer Association and others. Their mission is to inform the public and policymakers about the extraordinary potential of this research, as well as ensuring that stem cell research receives proper oversight and support through federal funding.

Pluripotent stem cells which have been used in research so far have come from two different sources: early-stage embryos donated by people who were undergoing fertility treatment at an in vitro fertilization clinic, and non-living fetuses obtained from terminated pregnancies. Federal law prohibits the US Department of Health and Human Services (DHHS) from funding human embryo research. However, the DHHS has concluded that this prohibition does not apply to research utilizing human pluripotent stem cells because such cells are not embryos. However, since they are derived from non-living fetuses, they fall under the legal definition of human fetal tissue and are subject to certain federal restrictions on the use of such tissue. The National Institutes of Health (NIH) plans to move forward to develop rigorous guidelines that address the ethical, legal and social issues relevant to this research. CURe believes that federal funding is essential to continuing research in this area and encourages Congress to maintain such funding and assert public oversight of the research. In our state, the Spokane support group has been representing TSA as part of the CURe coalition by writing Rep. George Nethercutt and requesting his help on this issue. Please write your senator or representative to let him/her know your opinion regarding stem cell research.

New Type of Medication Offers Tic Relief in Adults with TS
The 3rd International Scientific Symposium on Tourette Syndrome was held in early June in New York City. Researchers from Emory University in Atlanta presented data regarding a medication called Tacrine hydrocloride. This medication is currently prescribed for selected memory disorders, not for TS, however, in a study with adult TS sufferers, it was shown to reduce body and vocal tics. There was also improvement in attentional difficulties, hyperactivity, impulsivity and obsessive thinking.

Tacrine is a cholinergic agent that promotes acetycholine transmission in the brain. It has been shown that drugs that block acetycholine transmission aggravate tics, so it makes sense that Tacrine would do the opposite. However, researchers have found that Tacrine must be taken in only low dosages, because higher dosages either didn’t work or aggravated the symptoms. It is also a short acting drug which must be taken four times a day. It can cause liver damage and thus requires periodic monitoring of liver function. What makes these findings exciting is that even if Tacrine itself does not become a drug of choice for those with TS, it points the way to a new category of medications that may prove to be safer and more effective than those currently in use such as dopamine blockers, selective serotonin reuptake inhibitors and stimulants.

Easier to Swallow Medicine
If you or your child has trouble taking needed medications because of their awful taste, ask your pharmacist about FLAVORx. This is a line of potions which can be mixed with the medicine to make it a little easier to swallow. Bubble gum and grape are the most popular flavors! The concoction adds about $3 to the cost of the medication. Only about 1,000 pharmacies in the country offer it, so you might need to search around a bit, but if taking medications is a daily struggle, it might be worth it.

Genetic Marker for TS
The world-wide search to find a genetic marker for TS took a “major step forward” with the announcement on Saturday, June 5, 1999 of results of a study by the Tourette Syndrome Association International Consortium for TS Genetics at the 3rd International Scientific Symposium on TS at the Marriott World Trade Center that weekend.

David Pauls, Ph.D., a Yale Child Study Center population geneticist, said that the Consortium’s study discovered “two small pieces of the genome that may be strongly implicated with TS and four additional regions that may contribute” to the baffling disorder.

“This is the best information that we’ve ever had in terms of the actual location of a gene or genes for TS,” Dr. Pauls said. “It is a major step forward.” The geneticist noted that all available evidence accrued over the last 30 years suggests that genetic factors are important for the expression of TS and that it is highly probably that several genes are involved. “This new data uncovered by our ten-center International Consortium strengthens that hypothesis and provides pointers to where these genes may be,” he said.

The multi-site study, accepted for publication in The American Journal of Human Genetics, involved 76 families with two or more children affected with TS…a total of 100 sibling pairs. Clinical information was taken as well as blood samples for DNA analysis. A panel of markers relatively evenly spaced across the genome were chosen. All of the markers were typed in all of the families to see whether there was an excess sharing of particular forms of markers by the affected sibling pairs. When there is a change in a particular region of TS-affected siblings that region is more likely to share markers that are close to an abnormal gene than those who are unaffected. Each of the markers has many different forms. If there is increased sharing of these different forms it suggests increasing susceptibility for TS.

“The next step,” said Dr. Pauls, “is to get more data from more families to see whether these findings hold up. In the process our group will try to narrow the length of the region so that it is small enough to discover which gene is increasing the susceptibility for Tourette Syndrome.”

Sponsored by the TSA, Consortium members include more than 30 investigators working in five countries.

The 3rd International Scientific Symposium on TS in a once-in-a-decade meeting of distinguished scientists from around the world sharing major findings and cutting-edge developments in all facets of TS and associated disorders.

Reprinted from Summer 1999 issue of TSA’s Chapter Connection

The TSA Medical Advisory Board has not reviewed the material in this newsletter. The various authors are solely responsible for their comments.

UPCOMING CONFERENCES

Vancouver Conference
“Tic-Tac-TS: Winning Strategies” is the name of the annual conference sponsored by the Tourette Syndrome Foundation of Canada’s Greater Vancouver Chapter. Speakers will nclude Mort Doran, MD, board member of the TSFC and a surgeon with TS; Sheryl Pruitt, co-author of the excellent book for parents and educators, Teaching the Tiger; Diane Fast, MD, and Anton Scamvougeras, MD, both Professors of Psychiatry at the University of British Columbia; and Tristan McElheron, president of the Greater Vancouver Chapter.

Date & Time:	November 20, 8am-3:30pm
Location:	Coast Plaza Suite Hotel at Stanley Park, Vancouver
Contact:	(604) 732-3594 to register

Work Now & in the Future Conference
Individuals with disabilities, parents, employers, service providers and other interested parties are invited to create new employment opportunities for individuals with disabilities.

Date:		November 7-9
Location:	Portland, OR
Contact:	Linda MacKenzie, 1-800-634-4473

ACCESS Job Fair

This is a job fair only for people with disabilities. Employers interested in employing people with disablities will be present to talk with you. Training will also be offered prior to the event to learn how to network with employers.

Date:         October 27
Location:     Seattle Center
Contact:      Della Shaffer, 1-877-975-8787

RESOURCE MATERIALS

Periodically, we list web sites of interest to our readers. Here are a few more:

www.ldonline.org Information on learning disabilities

www.tourettesyndrome.net Information on TS and associated disorders with focus on education authored by Leslie Packer, Ph.D., president of New York-Long Island TSA chapter

www.mentalhealth.com/fr30.html Internet Mental Health - extensive information on psychiatric medications

www.mhsource.com/edu/psytimes/disorder.html Psychiatric Times articles

www.angelfire.com/ok/onedayatatime/ Tips for Tourettes with links to many other sites

members.tripod.com/~tourette13/ Facts about TS

www.tourettesyndrome.org Web site of the Tourette Spectrum Disorder Assoc.

Three recently published books will also be of interest:

Tourette’s Syndrome - Tics, Obsessions, Compulsions Developmental Psychopathology and Clinical Care, edited by Dr. James Leckman & Dr. Donald Cohen, published by John Wiley & Sons

A comprehensive medical text representing research and treatment of TS and associated disorders at the Yale Child Study Center. Thirty-three authors have contributed to this book which is divided into three sections focusing on individuals, symptoms and diagnosis; cuases and determinants; and partnerships for making the best of TS.

A Cursing Brain, by Howard Kushner, published by Harvard University Press This book traces the changing classification and medical perception of TS during the last 100 years since it was first identified by Gilles de la Tourette.

The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, “Chronically Inflexible” Children, by Ross Greene, Ph.D., published by Harpercollins The author discusses how this kind of child has developmental deficits in flexibility and frustration tolerance, and offers tangible strategies to deal with reducing hostility and antagonism as well as developing appropriate skills to handle frustration.

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