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NTSA Board of Directors Meet in Baltimore

The NTSA Board of Directors had their recent face-to-face meeting in Baltimore, MD on Jan 17-19. With the organization half way through its five year strategic plan, revisiting and updating the plan was a priority. The board centered its discussion on the need to maintain a balanced organizational agenda by securing the resources necessary to effectively support a leading edge research grants program, comprehensive family support and public and professional education program. The next meeting is scheduled for June 28-29 in Dallas, TX.

1,000 Guests at the Snow Ball

In its 8th year as the finale of the winter board meetings, the Snow Ball Dance this year made $15,000 with 1,000 guests attending. Funds go to the Patrick Hart Foundation for Genetic Research who will combine it with the NTSA Founder's Research Award to create a $30,000 NTSA Research Grant Award. This year's award goes to Elizabeth Petri Henske at Fox Chase Cancer Center in Philadelphia for her research about the TS tumor suppressor gene.

Great American Garage Sale Locations

Susan Taylor (410-757-2020) will be holding a garage sale in Annapolis, Md., on April 19. On May 17, John and Cathy Brooks, Kingsville, Md. (410-592-5243); Kim Goodloe, Ashland, Va., (804-798-1940); Betty Joe Hatton, Chester, Va., (804-526-9646); and Shonnie Johnson, Great Falls, Va., (703-444-4222) will be holding garage sales. If you can help or have items to donate, please contact these volunteers.

[From the Winter 1997 issue]

Clinic Report

More than five families showed up at the fall tri-regional clinic. While some families came to meet with doctors, others arrived specifically to meet other TS affected families and to offer support. Lively discussions were heard about epilepsy treatment methods and special education programs. In addition to the regular staff, neurosurgeon Dr. Micheal Medlock and neurologist Dr. Phillip Pearl were on hand to examine patients. Check out the TS Clinic page for more information.

Society for Neuroscience Meeting

Vicky Whittemore attended the gathering of 26,000 neuroscientists from around the world. Researchers announced two important findings, one of them concerning the epilepsy treatment drug, Noticing that the scientists are often unaware of how their research is relevant to specific diseases, Vicky submitted a proposal for a satellite seminar on the topic.

Urgent!Volunteers needed!

The NTSA main office is currently short-staffed and looking for volunteers who can assist with the clerical work such as filing and answering phone calls. Contact NTSA with an attention to Marsha.

[From the Fall 1996 issue]

Clinic Report

The tri-regional clinic welcomed Nancy Elling, founder, back from Texas on July 27. As usual, the clinic was conducted under the medical direction of neurologist, Dr. William McClintock who has also been recently appointed to the Professional Advisory Board of NTSA. Neurologist Dr. David Daigh and dermatologist, Dr. A. Howland Hartley (substituting for Dr. Robert Silverman) were also on hand. Dr. Hartley comes from the Children's Hospital in Washington DC. Check out the TS Clinic page for more information.

Brain Mapping Lecture

Under the title of "Brain Mapping and Epilepsy Surgery," NTSA launched the first of a conference series in this region. On September 21, Dr. Michael Medlock from Georgetown University spoke to several families about the subject at the NTSA main office in Landover. If you have any ideas for future lectures or are interested in attending the series, contact Nancy Elling or Susan Taylor.

Golfing and Dining

Steve and Abbe Barbato and Don and Mary Hurrell hosted another successful Delmarpa Open on August 19 with 92 golfers and over 120 guests at the banquet afterwards. Participants spent a beautiful day at the Brantwood Golf Course in Elkton, MD. The event raised over $20,000!

Urgent!Volunteers needed!

The NTSA main office is currently short-staffed and looking for volunteers who can assist with the clerical work such as filing and answering phone calls. Contact NTSA with an attention to Marsha.

[From the Summer 1996 issue]

Garage Sale Bonanza

Maryland volunteers organized three garage sales throughout the month of May making a total of $3,250. On May 4, Susan Taylor, Maryland area rep., raised over $2,000 at a garage sale in Baltimore with the generous help of the employees of Guardian Moving and Storage Company (Gene Smoot, Karen Randle, Kim Goodstreet, and Barb Burdette) who "went far beyond their call of duty." There were hot-dogs, baked goods, balloons, and even a clown on the premises. Despite two bouts of rain during the day, it was a huge success! Separately, Nancy Snowden also held a garage sale in Baltimore on the same day, making $700. On May 11, Mary Gilewski had a garage sale in Clinton, MD with her entire family pitching in to run the event and the Rainbow Movers' help in moving and storing items (they also donated desks and chairs to sell). She raised about $550. Thank you to all of the families who participated. If anyone is interested in organizing their own garage sale, contact NTSA .

Reporting on the TSC Clinic in April

This quarterly event in Fairfax, VA under the medical direction of Dr. William McClintock was another success with six families attending and Dr. Susan Black speaking about the genetic aspects of the disease. Along with the two doctors, neurologist Dr. David Daigh and dermatologist Dr. Robert Silverman were also on hand to examine patients, screen family members, and answer questions. Started in January 1994 by Nancy Elling, nurse and TS parent, this clinic is modeled after other successful clinics in the United States and Great Britain. Check out the TS Clinic page for more information.

Delaware/ Pennsylvania/ New Jersey Updates:
[From the Spring 1997 issue]

Great American Garage Sale Locations

This year the following families are planning garage sales on May 17. Come support NTSA by showing up or better yet volunteer or contribute items!
Jane Herbstritt, Dubois, Pa. (814-371-9053) Patrice Park, Delaware (302-834-4488); Carolyn Pimentael, Jersey City (201-963-3551).

Shrub Sale Volunteers Needed!!!

In order to ensure another successful shrub sale, Sue Goodrich is in need of as many volunteers as possible, particularly in the two weeks prior to the event. If you have any spare time, please call Sue at (717) 786-4223.

[From the Winter 1997 issue]

Look for Another Camp!

Parents who were planning to put their children into the Easter Seals Summer Camp in Philadelphia next year might want to look for another camp. The camp will be closed next summer due to construction. It will re-open the following year.

Family Support

NTSA member Joan Ridler is interested in getting together with other TS families in the Philadelphia/New Jersey region. For more information, you can e-mail her.

Valentines for TS

It's that time of the year again. Selected Wendy's restaurants in PA, NY, NJ, and DE will be selling coupon books for $1 with proceeds donated to NTSA. Sold from Jan 6 to Feb 14, each coupon in the booklets have colorful Valentines on the reverse side. So tell all of your friends and family and support the cause!

Easter Fund-raising

If you are interested in selling chocolate bunnies as an Easter fund-raiser, e-mail Joan Ridler for more information.

[From the Fall 1996 issue]

Look for Another Camp!

Parents who were planning to put their children into the Easter Seals Summer Camp in Philadelphia next year might want to look for another camp. The camp will be closed next summer due to construction. It will re-open the following year.

Supporting Each Other

NTSA members in Pennsylvania met at the end of Sept/ early Oct. to share their experience with TS. Call Rose Coulter for information about the next meeting.

[From the Summer 1996 issue]

An Evening of Steaks, Beer, and Dancing

At least 100 people attended the Beef and Beer at the Knights of Columbus Hall in Bridesburg on May 4. A first time event organized by Colleen Murphy, it was lots of fun and laughs. Everyone spent the evening eating, drinking, relaxing, and "kickin' up their heels and dancing." The event raised $1600.

A Huge Success at the 10th Annual Shrub Sale

When the clock hit 6 and ribbon was cut in the early morning of May 25, over 400 people, many of whom were waiting on line since 4am, stampeded towards the 50 kinds of plants and trees including rose and azalea bushes. By 7:30am, Sue Goodrich, who had coordinated this event, had made about $60,000. With the help of her husband Burt's employer, the Conard-Pyle Company, the event was the most successful shrub sale ever with a profit of $85,000. Held in Lancaster, PA, the event drew about 3,000 people. "You really can't understand how exciting it is unless you were there, " commented Steve Hadley from NTSA.

Demonstration Fund Raiser

Joan Ridler organized a Wine and Cheese/ Pampered Chef Kitchen Demonstration event on June 8. A representative from the Pampered Chef demonstrated their line of kitchen utensils and cookware. While it was very enjoyable, she wished that more NTSA members had responded.

Southern Virginia Update:
[From the Summer 1996 issue]

Ladies' Luncheon

On June 12th, Melanie Green organized a Ladies' Luncheon to share and discuss TS information and have some fun. Call Melanie Green at (804) 271-0844 for information on the next event!

To Report on Area Events:

The Mid-Atlantic regional newsletter covers Deleware, District of Columbia, Maryland, Pennsylvania, Virginia and West Virginia. We would also like to include past and future events in New York and New Jersey for those who can attend them. If your region is unlisted on this page, it is because there weren't any or I didn't know about it. Please contact the editor to share any upcoming or past events. They will also be included in the next issue of "Dialogue".