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Tuberous Sclerosis Alliance

Tuberous sclerosis support group and discussion community

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Tuberous Sclerosis Alliance

Scholarship opportunities

In: Educational issues

Little_Mikey

scholarship-opportunities

200208

Hello, I would like information on how to receive all scholarship opportunities for my son Austin will be a Senior in high school this fall. He has an interest in attending college; most likely out of state. He will need assistance to paying for college. Please notify me of all / any scholarship programs that Austin would be eligible to apply for. Thanks ... Read More

Tuberous Sclerosis Alliance

How do you make medical decisions?

Brian's journal

Brian

how-do-you-make-medical-decisions

200208

Dear members, As patients and caregivers, we have more sources of medical information available to us than ever before to help us make the best decisions possible for our health. Advice from our doctors is sometimes not the same as the information we learn from the experiences of our peers, and there are often other sources of information available as well. Some of our decisions feel ... Read More

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Tuberous Sclerosis Alliance

What’s the story of your rare disease diagnosis?

Brian's journal

Brian

whats-the-story-of-your-rare-disease-diagnosis-1

200208

Dear members, Today, more than 200,000 Inspire members have a rare condition. You have made Inspire a place to share your experiences with others who understand what you’re going through and help others at the same time. Many of you have described how long it took for you to receive an accurate diagnosis for your rare condition, while some of you found your diagnosis quickly. If you’d ... Read More

Tuberous Sclerosis Alliance

Sleeping

In: Features and symptoms

sforsythe0422

sleeping-28

200208

Hi my daughter is 4 with TSC and she was also diagnosed with autism spectrum and is having difficulties sleeping. Every time I put her to sleep she wants to get up and play or just sit in her room or be destructive. I have tried melatonin and it worked for a little bit. I have tried no naps during the day. I am constantly going in and out of her room 20 or more times a night just to ... Read More

Tuberous Sclerosis Alliance

Questions about Sabril

In: Parents, grandparents and caregivers of children with TSC

BonyLu

questions-about-sabril

200208

Just having a few questions about Sabril. Will really appreciate if anybody helps. How does it taste? Does it always cause insomnia or sleepiness? Is the child who takes Sabril supposed to have changes in behavior pattern? Is it possible that a baby takes Sabril but his behavior doesn't change? TIA ... Read More

Tuberous Sclerosis Alliance

Free Early Behavioral Intervention in Infants with TSC

In: Announcements

TSCclinicliaison

free-early-behavioral-intervention-in-infants-with-tsc-7

200208

FOR FAMILIES LIVING IN SOUTHERN CALIFORNIA...... Over the last year, Dr. Shafali Jeste and her team at UCLA have started an intervention study for young children with Tuberous Sclerosis Complex (TSC). The study includes free play-based behavioral intervention that may improve social and communication skills in children with TSC. The intervention will focus on teaching caregivers skills ... Read More

Tuberous Sclerosis Alliance

Are You A School PT?

In: Announcements

captainhook

are-you-a-school-pt

200208

The TS Alliance is looking for a Psychical Therapist that has experience working in a school system. If you are a PT with school experience we are looking for a volunteer to be part of our Educator Mentor Program. Below is a description of the program: TS Alliance Educator Mentor Program The Educator Mentor Program (EMP) was developed to support school systems in understanding the ... Read More

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Tuberous Sclerosis Alliance

Update on our now 21-year-old son going off of all meds for SEGAs

In: Features and symptoms

AvalonLove

update-on-our-now-21-year-old-son-going-off-of-all-meds-for-segas

200208

Our young adult son, now age 21, was in the amazing Afinitor trial for 5 years, starting at age 11 through 15, through Cincinnati Children's Hospital with excellent results on SEGA shrinkage, as well as pronounced angiofibromas clearing, as well as kidney lesions. As heard through the years about SEGA growth slowing when they stop growing, he decided to try going off Rapamune after ... Read More

Tuberous Sclerosis Alliance

Hello, everyone!

Radha_Inspire's journal

Radha_Inspire

hello-everyone-97

200208

Hello everyone! My name is Radha and I am the digital editor at Inspire. We’d like to share some news about an editorial initiative that we hope will be of use to you. Your community is a space where you can express your thoughts, seek support, and share information with fellow members, and will, of course, continue to be. My goal is to take cues from your discussions, your questions ... Read More

Tuberous Sclerosis Alliance

CT Free Disability Summit

In: Educational issues

captainhook

ct-free-disability-summit

200208

Free Disability Summit Mohegan Sun Uncasville, CT March 11, 2017 10am-4pm ~Video Self-Modeling: Behavior Change is Possible ~Preparing for College ~Charting the Life Course ~Transition 101 ~Respite 101 & Creative Housing Options ~Managing Challenging Behaviors in the Home ~Lighten Up: Student Panel on Overcoming Challenges ~Pathways to College For more information Call 860- 434-4800 ... Read More

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