Step Forward to Cure TSC Walk

More 50,000 kids have it but most of us have never heard of TSC. Step Forward to Cure TSC Walk hopes to change that.  Local mom Laura Marlin, TS Alliance of Indiana Chair is leading the fight for funding and education.

tsc brodyHer son Brody was about 5 1/2 months old when he started having infantile spasms. These appear to be very subtle but can be devastating and go undiagnosed.

I would encourage parents that if they feel something is wrong to follow their instincts.”

Tuberous sclerosis complex (TSC) is a rare genetic disorder that causes tumors to form in vital organs, primarily the brain, heart, kidneys, skin, lungs, eyes and liver.  TSC is also the leading genetic cause of both autism and epilepsy. Currently there is no cure but ongoing research focused on TSC will also pave the way for better treatments and therapies for other major diseases including cancer, diabetes, autism and epilepsy.

   TSC PIC 2TSC PIC 4You can Step Forward to Cure TSC by taking part in their walk this Saturday, May 16th at Billericay Park, 12690 Promise Road Fishers, Indiana.  Registration begins at 9am.

 

 

 

TSC PIC 3Make a difference while enjoying a great time at our annual Step Forward to Cure TSC walk!  They are providing refreshments, kid’s activities, entertainment, a great walk route, as well as updates and information from the TS Alliance. Plus, you’ll meet lots of local families, friends and partners. You’ll be a Super Hero for all adults and kids with TSC! Wear your favorite costume, or come as you are. Bring your family, friends, neighbors and co-workers;, some sunscreen; your walking shoes; and any donations you collect, then enjoy this day filled with hope and progress. Feel free to pack your own picnic lunch as well.TSC PIC

For more information, visit www.tsalliance.org

 

 

31 FACTS ABOUT TSC FOR 31 DAYS IN MAY (NATIONAL TSC AWARENESS MONTH)
1. TSC is genetic disorder that causes tumors to form in vital organs.
2. It is estimated that TSC affects 1 in 6,000 births.
3. More than 50,000 people in the USA have TSC; 1 million worldwide.
4. TSC is the leading genetic cause of epilepsy and autism.
5. TSC is more common than Lou Gehrig’s disease (ALS).
6. In TSC, there is no difference in the rates of autism spectrum disorder (ASD) or attention deficit hyperactivity disorder (ADHD) between males and females, as compared to the non-TSC population where there is a male predominance.
7. There is no cure for TSC.
8. Research into TSC may lead to better understanding of other diseases, like cancer, autism and epilepsy.
9. Seizures occur in up to 90 percent of people with TSC.
10. TSC affects everyone differently; some have very mild symptoms while others are severely impacted.
11. TSC shows no gender bias and occurs in all races and ethnic groups.
12. About 45 to 60 percent of people with TSC have intellectual disabilities including hyperactivity, developmental delay, autism or aggression.
13. TS Alliance-funded research led to the identification of two genes that cause TSC; these genes are called TSC1 and TSC2.
14. Current molecular testing for TSC identifies a TSC1 or TSC2 mutation in up to 85% of individuals with a definite diagnosis of TSC by clinical criteria.
15. Somewhere in the world, a child is born with TSC every 20 minutes.
16. The ultraviolet light of a Wood’s lamp improves detection of the hypomelanotic macules (white spots) observed in nearly all individuals with TSC.
17. Facial angiofibromas generally appear by age 5 years and affect up to 90% of individuals with TSC.
18. Very large mutations involving the TSC2 gene and adjacent PKD1 gene on chromosome 16p13 typically result in severe polycystic kidney disease during childhood.
19. Lymphangioleiomyomatosis (LAM) is the primary pulmonary feature of TSC occurring almost exclusively in females in up to 40% of those with TSC after puberty.
20. About 1/3 of the time, when a child is diagnosed with TSC, one of the parents also has TSC. The remaining 2/3 of diagnoses occur due to spontaneous mutation (we don’t know why).
21. If a parent is affected, his or her children have a 50% chance of inheriting the TSC gene.
22. If parents are unaffected, the chance of a sibling of someone diagnosed with TSC also having TSC is 1-2%.
23. Pre-implantation genetic diagnosis (PGD) is a technique that can detect the TSC mutation in embryos created through in vitro fertilization (IVF).
24. A naturally occurring substance derived from bacteria in the soil of Easter Island has led to development of promising treatments for some aspects of TSC.
25. Many infants with TSC are now diagnosed soon after birth thanks to prenatal identification of heart rhabdomyomas during routine ultrasound testing.
26. Dental pits occur in about 90% of people with TSC.
27. 98% of those diagnosed with TSC will experience one or more skin manifestations
28. 80% of those diagnosed with TSC will experience kidney problems due to TSC.
29. Infrequently, TSC can also lead to the formation of fibroids or tumors in the pancreas, bone, and liver.
30. Children identified with TSC as babies should be closely monitored for the need of early interventional services.
31. Communication between a child’s medical professionals and his/her school about TSC will improve outcomes for the child.

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