In Memory of Paul Ahlstedt.

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In Memory of Paul Ahlstedt.

  1. 1. Fall Kick Off Party When: November 15, 2008. Where: Dave & Buster’s at 10667 Westminster Blvd. Suite #100, Westminster, Colorado. Time: 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. is needed for an accurate head count by November 10 th ! Please call Linda Heathman at 303-948-1122 or Dana Holinka at 303-255-7093. IEP TRAINING AND DINNER WITH THE TS ALLIANCE Date: November 14, 2008 Time: 6:00 pm til 8:30 pm with dinner being served Location:Children’s Hospital in the Mt. Harvard Room Topic:Individual Education Plans, IEP’s Speaker: Dena Hook, TS Alliance Come meet Dena Hook from the Tuberous Sclerosis Alliance. Dena has more than 18 years experience in special COMMUNITY CONNECTIONS 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
  2. 2. 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 co- author of Success with IEP’s through Incentive Publications and an on line parent training program called Disciplining Your Adolescent. Don’t forget to bring your IEPs!! 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. 16th Ave. Denver, Colo. 80045 Please R.S.V.P. to Dana Holinka by November 10th 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. Rocky Mountain Regional
  3. 3. Conference 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 TSC CLINIC AT THE CHILDREN’S HOSPITAL IN DENVER, COLORADO 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.
  4. 4. 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 (TS) 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 child’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.
  5. 5. 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 Follow- up 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. 16th Ave. Box B155 Aurora, Colo. 80045 Surfing the Web 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.
  6. 6. 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/ Special Thanks to the Youman Family I wanted to acknowledge and the thank the Youman family for having their 3rd 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
  7. 7. adult support group meeting started contact Dana Holinka at 303-255- 7093 or emme01@msn.com.

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