In Memory of Paul
Ahlstedt.
Rocky Mountain
Board Members
Chair/Newsletter
Editor : Dana Holinka,
303.255.7093, emme01@msn.com
Education Booth
Coordinator:
Stephanie Frausto,
303.617.6472, peanut@rocketmail.com
Denver Regional
Conference
Contact: Cindy Fowler at 303.434.4365, chcinrox@aol.com
Mailing List
Coordinator :
Carol Bennett 1-719.748-
8363 or
Benn48@aol.com
.
Please contact Carol if there is a change in your address, new email address etc. We are still in need of Date of Birth information on many of our families, please send her a quick email and give her this information. If you would like to be removed from our list please let her know.
Tuberous Sclerosis
Alliance
801 Roeder Road
Suite 750
Silver Spring, MD 20910
Tel: 301.562.9890
Fax: 301.562.9870
Toll: 1.800.225.6872
Email: info@tsalliance.org
: November 15,
2008.
: Dave & Buster’s at 10667 Westminster
Blvd. Suite #100,
Westminster, Colorado.
1:00 pm – 5:00 pm
Come and join other families in the Rocky Mountain
Region at the Fall Kick Off
Party. Lunch will be served, door prizes will be given away and Santa will be making a visit. This is a great opportunity to bring our community alliance together and really fellowship.
Let’s celebrate our community alliance with fun, friendship and thankfulness.
Mandatory R.S.V.P
th
Please call Linda Heathman at 303-948-1122 or Dana
Holinka at 303-255-7093.
: November 14, 2008
6:00 pm til 8:30 pm with dinner being served
Children’s Hospital in the Mt. Harvard Room
Individual Education
Plans, IEP’s
: Dena Hook, TS
Alliance
Come meet Dena Hook from the Tuberous
Sclerosis Alliance. Dena has more than 18 years experience in special education and social services. She is a certified

Special Education &
Truancy Mediator and has administered and implemented the
Individuals with
Disabilities Education
Improvement Act (IDEA) under Part C. Dena is a
National Speaker on
Special Education and has trained teacher and administrators in their responsibilities under
IDEA 2004.
She is the former National
Technical Assistant
Coordinator for the
National Alliance for
Parent Training and
Information centers serving the fourteen
Midwest States. Dena is an expert in the IEP process and is a published author of How to Write a
Successful IEP, and the coauthor of Success with
IEP’s through Incentive
Publications and an on line parent training program called Disciplining Your
Adolescent.
This event is being sponsored by the Tuberous Sclerosis
Clinic at Children’s Hospital.
No child care provided.
Children’s Hospital is located at 13123 E. 16 th Ave. Denver,
Colo. 80045
Please R.S.V.P. to Dana Holinka by November 10 th at 303-255-
7093 or emme01@msn.com
.
ARE YOU A MEMBER?
Membership in the TS Alliance does not require a monetary donation. Membership benefits are:
_ Voting rights
_ Perspective Newsletter
_ Exclusive access to the CEO
Blog
Join now!
Visit www.tsalliance.org
TS ALLIANCE NOW ON
FACEBOOK AND MYSPACE
The TS Alliance now has profiles on Facebook and
MySpace . Please join one of our groups today. When you join
Facebook you are teaching people about Tuberous Sclerosis and also raising money to help find a cure.

April 18, 2009
The TS Alliance of the Rocky
Mtn. Region is proud to present a regional conference on Saturday
April 18, 2009 at the Fitzsimons
Campus in Denver. Local, as well as national/international, speakers will be in town for a day of education regarding current treatment options as well as exciting new research.
This will be a fantastic opportunity to learn, ask questions of the best local and not so local experts, learn about regional resources, and to meet families from all around the
Rocky Mountain Region living with
TSC.
Planning is underway for this exciting and educational event and more information will be available in the next newsletter. Please mark your calendar now for this event.
You will not want to miss it!!
If you are interested in volunteering the day of the conference please contact, Cindy Fowler at 303-434-
4365 or chcinrox@aol.com
.
The TS Alliance rolls out updated web site!
The TS Alliance is pleased to offer a new website with improved navigation. We hope you like it. Check it out at www.tsalliance.org
The Tuberous Sclerosis Alliance (TS
Alliance) supports the vital role that a tuberous sclerosis complex (TSC) clinic can play in improving the lives of those affected. Below is information on the TSC clinic.
MULTIDISCIPLINARY CLINIC TEAM
MEMBERS:
Pediatric Neurology and Clinic
Medical Director, Dr. Paul Levisohn
Pediatric Nurse Practitioner/Clinic
Coordinator, Dee Daniels
MISSION:

The mission of the Tuberous
Sclerosis (T S) Clinic at the Children’s
Hospital in Denver is to provide comprehensive multidisciplinary health care of the highest quality to children with Tuberous Sclerosis
Complex as well as conduct research for TSC.
MULTIDISCIPLINARY CLINIC;
Our collaborative multidisciplinary team provides medical, genetic, neuropsychological and social support for our patients and their families.
During the visit to the Multidisciplinary
Clinic your child will be evaluated by a pediatric neurologist, a neurology pediatric nurse practitioner, a genetics counselor and a neuropsychologist.
Our social worker will also provide supportive counseling and assist with obtaining resources and support within the community.
FOLLOW-UP
Our follow-up Clinic provides ongoing care of the c hild’s medical, psychological and social needs.
During the follow-up visits your child will be evaluated by a neurologist and neurology pediatric nurse practitioner.
Since the clinic and its providers are located in the top five pediatric hospitals in the nation, each child has the opportunity to receive further evaluations by other medical specialties including ophthalmology, nephrology/urology, pulmonology, psychiatry, dermatology, cardiology and genetic counseling.
DIAGNOSTIC TESTING:
Certain diagnostic tests may be arranged prior, during or after the visit. These tests include:
-Brain MRI and other advanced neuro imaging
-EKG
-Echocardiogram
-Electroencephalogram (EEG)
-Chest Computerized
Tomography (Chest CT)
-Renal Ultrasound
TUBEROUS SCLEROSIS
MULTIDISCIPLINARY CLINIC TEAM
MEMBERS
Pediatric Neurology and Clinic
Medical Director
Paul Levisohn, M.D. is the medical director of the clinic and the neurologist providing on-going neurologic care. Dr. Levisohn is a board certified neurologist and epileptologist.
Pediatric Nurse Practitioner/Clinic
Coordinator
Dee Daniels R.N., P.N.P is an experienced neurology nurse practitioner. She previously worked in neurology at Cincinnati Children’s
Hospital Medical Center and is now at the Children’s Hospital in Denver. As a certified nurse practitioner she has advanced assessment skills, can prescribe medications and will assist in coordinating care with other specialty team members.
Geneticist/Dermatologist
Gary Bellus, Ph.D, M.D.
Genetics Counselor
Jennifer March

Neuropsychologist
Jennifer Janusz
APPOINTMENTS:
If you or a family member is affected by Tuberous Sclerosis please call our clinic to schedule an appointment. TS multidisciplinary clinic appointments or TS follow-up clinic appointments can be made by contacting Kim
Mondragon at 720-777-6895. The
Multidisciplinary Clinic lasts approximately 3 hours and the Followup Clinic appointments are one hour.
Please plan appropriately.
REFERRALS:
Referrals to the TS Clinic can be made either by physician referral or family self referral. Please contact your insurance provider to obtain prior authorization as needed. Linda Maes is the insurance coordinator for the
Neurology Department. For additional inquires, call 720-777-1234.
MEDICAL RECORDS:
It is important that we review all medical records including any diagnostic tests prior to the visit. If you have records from outside the
Children’s Hospital please mail them to us prior to your child’s appointment.
Please provide x-rays) MRI, etc) on disk or film and mail to:
Dee Daniels R.N., P.N.P.
The Children’s Hospital
13123 E. 16 th Ave. Box B155
Aurora, Colo. 80045
www.sportsmadepossible.org
This is a website to help you get your child with disabilities involved in team sports. www.vermontcountrystore.com
They sell a straw you can use to help your kids take their medications. www.LetSayThanks.com
Pick out a thank you card and
Xerox will print it and it will be sent to a soldier who is currently serving in Iraq . You can't pick out who gets it, but it will go to a member of the armed services. www.bridges4kids.org
This website gives you list ’s of sample IEP goals. It might be helpful to you when working on your own child's IEP. www.unlockingautism.org
This is a good source for many of us with children with Autism.
National Links of

Interest:
_ Wright’s Law www.wrightslaw.com
_ Seizure Tracker http://www.seizuretracker.com/
_ MedAlert http://www.medicalert.org
_ Epilepsy Foundation of America http://www.epilepsyfoundation.or g/
_ National Institute of Neurological
Disorders and Stroke http://www.ninds.nih.gov/
_ The ARC Link http://www.thearclink.org/
I wanted to acknowledge and the thank the Youman family for having their 3 rd Annual Youman’s BBQ!
It was a great day, wonderful turn out and delicious food! They helped raised over $6,000.00 at this event. Way to Go!
I would also like to welcome Ginny,
John and Neil Bruno to our
Community Alliance.
THOUGHTS FOR YOUR
SOUL……
I am grateful for the ability to send love at this moment.
I appreciate the small acts of kindness that greet me every day, at work, at the store, in school, at home, on the road, and on the street.
When people do things to irritate me, I put myself in their shoes and try to understand them.
Shop for a Cause on Saturday,
September 20, when Macy's stores nationwide will host a charity shopping day. Donations will benefit the TS Alliance so click here for complete information.
Sign Our Online Petition to
Increase TSC Federal
Research Funding. It's quick, easy and free. After you sign it, please forward the link to all your friends, coworkers and family too. Get started here .
If you are interested in getting a TSC adult support group meeting started contact Dana Holinka at 303-255-
7093 or emme01@msn.com.