2014 Gallery

TS Alliance President & CEO (right) with actress Kate Flannery (middle) thank all the TSC researchers from around the world for their dedication to finding better treatments and a cure for tuberous sclerosis complex.

Twins Abby and Amelia Cooper thank The Lauren Krinsky Family – David, Cathy (shown in middle) Lauren and Aaron — who have been instrumental in guiding the TS Alliance’s efforts to expand services for adults with TSC, to raise awareness of the disease and our organization, and especially to grow vital resources to support the TS Alliance’s strategic initiatives.

Sue is my inspirational Mum! She was the main carer and advocate for my sister Lizzie who had TSC.
Sue was also the President of The Australasian Tuberous Sclerosis Society (ATSS) for almost 20 years. Her dedication to improving the lives of all families with TSC in Australia and New Zealand motivates me today in my own work for both ATSS and TSC International. Happy Global Awareness Day!

I am grateful to my family for their good-humour, patience and unwavering support in my work as an advocate for TSCanada and TSC International. My profound thanks to the members of our Canadian TSC community who have so generously shared their courageous lives. Much appreciation to the volunteers in Canada and worldwide who have provided so much help and camaraderie. Finally, I am in awe of our TSC doctors and researchers. Their dedication is a continuing inspiration. Happy Global Awareness Day!

My son has TSC…we’re together and its so nice. My parents, and friends help us to live with TS. Thanks everyone! And thanks God for everythink.

My daughter was diagnosed at birth and has overcome heart surgery at 7days old. She is a fighter and gives me a reason to always strive to do better in life!

Добрый день, это Мишенька Волобоев. Болен Туберозным склерозом с 8ми месяцев. Сейчс ему 3,10 года. Лечимся Депакином Хроносфера, Финлепсином и Топамаксом.

My daughter has TSC, she can read and write, which most affects your life are epileptic convulsions and the delay in intellectual development, yet their emotions is very good, she dances, sings, laughs, cries, she thinks intuitively …. Nevertheless, I love her.

My son Ben who is 10 this yr has been the most positive person in our life’s! His diagnosis has changed our life completely & we wouldn’t change him 4 the world so I’d like to thank Ben for been apart of our life & teaching us something new everyday!

TSC Alliance has impacted my life because of the clinic here in Houston. My TSC friends because of the friendships I’ve made.

David has made me a all around better person!… Of course I hope and pray for a cure! I hate seeing my son suffer everyday from TSC.. But he has taught me to look at life at a totally different prospective & to appreciate the little things in life a lot more!! The things I may have taken for granted before!! In a way, we enjoy the struggle.. because once we make it through that struggle.. David is a little bit better! We all are a little bit stronger & we are ready to take on the next struggle!

Lisa och hennes syster Maja i Lisas kök. Lisa tackar världens bästa syster för allt hon gör för henne.Lisa and her sister Maja in Lisas´s kitchen. Lisa thanks the best sister in the whole wide world for all that she does for her.

This is a picture of my mother who has been a strong source of support for me and my family

My sister has been encouraging and constantly a reminder of hope and faith. Jackson is Nikkos brother and makes our Nikko laugh the most bringing so much joy to us all

Expertmeeting TSC 6 and 7 of April 2014: These experts help us in trying to find the best way to live with tsc.

I want to thank my little Sister Amanda and her family for everything they have done to help us; from the moment we found out our son Ben had TSC2; she jumped right in to fight the fight with us. Without her support, we would not be where we are today. She has been my rock on so many hard days in this journey.

Lots of Love
James, Ben & Becky

Dr. Wu and Dr. Mathern and the team at UCLA have taken such good care of Keenan. Dr. Wu, Keenan’s neurologist, has gone above and beyond a great Dr., always having a plan and treating Keenan as far more than just a patient. And Dr. Mathern, Keenan’s neurosurgeon, through his amazing skills and deep caring has helped Keenan gain seizure control!
Thank you Dr. Wu and Dr. Mathern for guiding us through this extremely scarey and stressful first year of Keenan’s diagnosis with such amazing care

Dr. Bissler has made a huge difference in Chloe’s life over the past four years. Chloe has TSC and PKD so we need a doctor who knows his stuff. And Dr. Bissler definitely knows his stuff! He makes sure we are doing everything we can to keep her little kidneys healthy so she can live a long life. On top of being a great doctor, he is just a really nice guy. We travel from SC all the way to TN (OH up until recently) to see him. We always look forward to seeing him and his staff.

TACK till vårt svenska multidisciplinära TSC-team. A World of THANKS to our national multidisciplinary TSC-team

Nurse Jenn is incredibly caring, kind and responsive. If we have a question or need assistance, she meets with the TSC team and gets back to us immediately. There’s never any delay. Luke and his family appreciate her so much!

Dr. Jurriaan Peters truly cares about his patients. When we first met Dr. Peters, he studied Luke’s ~100 page medical history before meeting with us to review next steps. He very well prepared. Dr. Peters’s first med plan gave Luke ~3mon seizure freedom. When the seizures came back and we were at the end of our rope, he proposed a new plan that gave Luke a year and a half of seizure freedom and is still holding strong. He’s called to check in on Luke from home. He cares so much!

So many have contributed to my life, my incredible grandparents, amazing family, friends, therapists and doctors. My parents and I are infinitely grateful for all of the love and continued support throughout this incredible journey!

io e mia figlia Ilaria siamo affette da TSC. Ringraziamo Paolo, mio marito e papà di Ilaria per averci sostenuto e seguito in questo difficile cammino con TSC. Paolo ti vogliamo un mondo di bene!! Manuela ed Ilaria

We would like to thank all of our friends and family for the many prayers that have been said and continue to be said for Miley’s health and development! Many prayers have already been answered! We love you all!

This picture was taken at the Inaugural National Walk on the Mall in 2013. We had a great day and were joined by cousins, cousin’s friend, nieces and nephews, brother in law and sister in law along with many others from across the country. Soon, we will do this again to mark the end of the World TSC Conference in July. Can’t wait to meet so many new friends from across the globe.

Thanking my daughters Tanya, and Kara and my son , Mitch for always loving and caring selflessly for their big sister Stacia , who died at 31 from tsc. I couldnt have raised her without their help! Thanks for always being proud of her, no matter how difficult she could be!

Our family is truly blessed to have a “world” of support around us. These are just a few of the wonderful people that show us daily that we will never be alone in our fight against Tuberous Sclerosis Complex. We are sending our sincerest Thanks to each an every one of them.

Love and Hugs from,
Mackenzie, Caden, Ron and Nicole Hutchison

A big thank you to my sisters, Brooke and Alli! They have loved me unconditionally, and have been with me every step of the way with TS. I have been so blessed with two amazing older sisters!

This is my Granddaughter Mia who is the most gorgeous girl ever and makes me proud to be her SheShe.
She was diagnosed with TSC at 11 months old and has taught the whole family how precious and wonderful everyday can be if we all love and help each other.

Our family and friends have been so supportive. We cannot thank them enough.

Dr. Khan truly cares about his patients. He is very knowledgeable about TSC. He put Jared on afinitor 18 months ago and we have seen excellent results. Dr. Khan is really interested in the research side of TSC. Without Dr. Khan’s guidance of keeping medication levels under control, and frequent MRI checks for Jared, we would undoubtedly be facing lots of problems.

Thank you mommy and Grandma and Grandpa and Aunt brandi uncle Dj! He was diagnosed at 3 mths! He always smiles no matter what! Always brings smiles to those who meet him! His dreams will be big one day! And he will fulfill everyone!

For putting up with my TSC, going to meetings, conferences etc. to keep up with everything and always being supportive.

Keira gives thanks to the staff and Students at Sliver Creek Public School in Georgetown. A special thanks to her two EA’s (in the picture with Keira) who have gone above and beyond to help make Keira’s day at school safe and successful. This has been Keira’s hardest year of her life and we know that she is safe in the care of these two amazing, wonderful, caring and loving ladies. Thank you, Thank you, Thank You
The Poff Family:)

My second baby, Denise Rita, is affected by tsc, she is 2 years old and i’m in love with her so much… her sister Arianna too… At first i was scared, I know, it’s not easy, but she’s a magic baby…

My family has helped me in every moment of my life, the bad ones and good ones also.

Sebastian luzardo give a new meaning to my life

Ciao da Denis

Dr. Bissler saved my life!

I am thanking my mother for having to sit at my side through all exams and through the time that I had surgery when I was 5 years old I had surgery on my brain for tuberous sclerosis complex and it was a lot for my mom to have to go through and I love her for being there for me through these tough times a person like me has to go through and she will be there for me as long as she is here I will be their for her and my family I love my mom for standing brave and tall through big and small.

Dr Jeremy Freeman and the Neurology team at the Royal Children’s Hospital in Melbourne have been there for Alila throughout her battle with TSC related Epilepsy. We couldn’t do it without them!

Esther tackar morfar och mormor som varje onsdag badar och tränar med henne på habiliteringsbadet på sjukhuset.

Esther want to say thanks to grandpa and grandma who every wednesday goes and practise swimming in the pool at the hospital with her.

We are “frequent fliers” at the Alberta Children’s Hospital. The doctors, nurses, pharmacists, eeg techs have been such a big part of our lives. The care and dedication to finding a way to make Jarek’s life better have been nothing short of heroic. There have been times when the staff have been closer than family. We are so blessed to have this world class hospital available to us.

There are too many to thank just one person. Over the last 11 years we have had many ups and downs and our family, friends, the TS Alliance and fellow TSC warriors have made a HUGE impact in our life. Your encouragement, love, prayers and understanding give us daily hope for a brighter future.

Tindra vill tacka sin underbara pappa som alltid finns där vid hennes sida.
Tindra wants to thank her wounderful father that is always there by her side.

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In everyway

To our family & friends who have walked into our lives, stayed with us as we traverse our journey with TSC, celebrated with every milestone of Kayla, and lent a shoulder to cry on when we are on our lowest point of this roller coaster ride. To Kayla’s teacher, Ms. Erica, who never runs out of ideas to help bring out Kayla’s fullest potential. To Kayla’s PT, Ms. Jessica, who pushes her to her limits, & believing in her. To Kayla’s bus drivers, for bringing her safe to school. A BIG thank you!

un grazie di cuore all AC H.Camara per aver sempre creduto in me ed avermi reso un vero campione in campo e nella vita!

I work for the Tuberous Sclerosis Association UK. Everyday I am amazed at the work of our fundraisers, the daring stunts and their commitment to supporting families affected by TSC. I salute you all!

My son Hamish has TSC. He attends a specialist school here in Melbourne. The care Hamish’s teachers show towards him and his young classmates is amazing. Truly a labour of love.

My daughter, Bailey, has TSC2. She was diagnosed at 5 months after having infantile spasms. Currently, she is globally delayed. Although, she is non-verbal she has taught me so many things through her actions. I’ve learned to never take small things for granted, to be thankful for everything, to fight and never give up, and to love with all my heart.

The Tuberous Sclerosis Alliance staff members thank YOU, our constituents, for inspiring us daily.

Learnt to be patient, more prayerful, hopeful, compassionate,giving and forgiving, made us meet new friends and families
Chloe my daughter made us travel to places we could only dream of!

Min mamma som alltid ställer upp.

This is my son and want to thank him for showing me happiness and strength everyday!! He is smart and bright on heck of a fighter he has been diagnosed with tsc2 since four months old and hsving seizures since two months old. We love you oir little warrior

I am thankful to the members of the TS Alliance of Israel team as we work together to build our organization. (Sitting from left, Vered Israel-Bloom, Carmella Yosef, Michal Ovadia, and Nora Ovadia. Standing from left, Gil Amit, Dan Bloom, Yigal Penso, Victor Peretz, and Savion Yosef.)

I am grateful for the years of compassionate care provided by Ravit and Dr. Toledano of the pediatric neurology department at Dana Children’s Hospital in Tel Aviv. From the beginning, they both have been a source of understanding and comfort. Thank you for all of your help! (From left, Ravit Zimerman and Dr. Hagit Toledano)

I’d like to express my appreciation for the speakers that made this year’s TSC meeting so inspirational. Some of the speakers, pictured from the left, are Dr. Shoshi Greenberger, Dr. Michal Tzadok, Prof. Bruria Gidoni-Ben-Zeev, Dr. Steve Roberds, Dan Bloom, Dr. Jonathan Roth, Dr. Efrat Ben Shalom, and Savion Yosef.

Dr. Tal Gilboa is a pediatric neurologist and the head of the team treating TSC patients at Jerusalem’s Shaare Zedek Medical Center. Thank you Dr. Gilboa for everything you and your team are doing to improve the lives of everyone in the TSC community!

Michal Leithner Sanigo is the administrative coordinator at The Clinic for Multidisciplinary Treatment of Tuberous Sclerosis at Safra Children’s Hospital at Israel’s Sheba Medical Center. She’s the lynchpin, coordinating the operations at the clinic and helping to increase the level of care to the TSC community. Thank you Michal!

Dr. Michal Tzadok is the head of The Clinic for Multidisciplinary Treatment of Tuberous Sclerosis at Safra Children’s Hospital at Israel’s Sheba Medical Center. She recently acquired official TSC clinic designation from the TS Alliance – the 1st outside of the USA. Also, this year, she was instrumental in staging the national TSC meeting with inspiring speakers from near and far. Thank you for everything you’re doing to help the TSC community!

I’d like to express my appreciation for all of the contributions made by Dr. Jonathan Roth, pediatric neurosurgeon at Israel’s Dana-Dwek Children’s Hospital. From helping us to publish a Hebrew version of the consensus guidelines, to your role in making the national TSC meetings such a success, to your unwavering support for us… Thank you! It’s an honor to have you as a friend.

Edna Fadida is the administrative director for the pediatric neurosurgery department at Israel’s Dana-Dwek Children’s Hospital. I am so grateful for her help and willingness to support the TSC community in Israel. Your contributions are appreciated! Thank you!

I was diagnosed at 3 months of age with a mild case of TSC. I want to thank my mother for being there for me every step of the way and continuing to do so.

Dear Aiden, Thank you for being such a great little brother who always looks after me. I know you don’t always understand me but one day you will. I am greatful to have such a cool and awesome brother. Thank you for loving me. Love you
DeDe

Professor Han is a Pediatric Doctor who first diagnose me to have the TSC. He then forwarded me to the Child Development Center where the doctors, nurses, therapists and psychology help me along especially in making other people to understand me as one of the TSC heroes. Professor Han did many things that make everything ran smooth. MRI, scanning, medicine intake, blood sample taken for genetic testing in Oxford. But Prof Han had gone back to his country for good. I wish you luck Prof! Thanks!

I love my daughter, she made me happy.

Thank you Dan for everything you did, are doing and planning to do, to make the “Israeli TSC association” happen! for seeking for information and solutions, for being a leader, a team member, a partner and for the great father you are.

Tuberous sclerosis

Caitlin is holding the sign. She is pretty profoundly impacted by TSC, but she is stronger thanks to all of the love & support she gets from everyone around her.

I am Thanking my Son Sae’Von for being so strong while battling TSC… I want him to know that I am extremely proud of him and honored to be his mother!!!!!!

благодарим гомеопата-невролога профессора Иванива А.П.,лечимся гомеопатией.

Bartek Lewczuk
Warsaw, Poland

Bartek, który od 30 lat choruje na TSC, dziękuje rodzinie i przyjaciołom, za wieloletnie wsparcie, opiekę i pomoc.
Dzięki nim czuje się kochany i bezpieczny.

Dziękujemy organizacjom TS Alliance i TSCi .
Dzięki Wam życie z TSC nabiera sensu !

Bartek, who has been living with TSC for over 30 years, would like to thank his family and friends for continued support, care, and help throughout the years.

Along with hi

Нашей Алине 9 лет. Больна ТС с 3-х месяцев. Принимает депакин хроно и топамакс.

Моя дочь с диагнозом ТС изменила мою жизнь, я благодарна ей за переоценку приоритетов и ценностей.

Thanks to Nancy Oberst-Tait, Ben has developed wonderful community skills and is a pro at community outings like going to Taco Mac for dinner! Thank you, Nancy!

If It wasn’t for Big Shane Kinard, I Would be posting my Picture on this site for the secong year now! I also wouldn’t have meant some Great people on Facebook with TSC Like Julie Vance, Kelly Martinez and Jack Royall just to name a few people! Several Others I did not name i talk to!

We are thankful for Shelley Walters.
She has been with us since day one. More than just a Nurse she is our friend. Whenever we have any type of concern she is quick to call us back. We couldn’t imagine going through this journey without a caring and compassionate person like Shelley. We Love you!!!

My son had been an inspiration to all of our family. Having disabilities is something very humbling and I learn so much each day. I’m a better parent because of my Matthew And could never imagine him any other way.

We thank, Shapovalova Evgenia Aleksandrovna, the assistant to chair of medical genetics and clinical neurophysiology of IPO GBOU VPO to KRASGM of the prof. V. F. Voyno-Yasenetsky Minzdrava of Russia
doctor neurologist-epileptolog of Scientific Center University Clinic Krasnoyarsk. It always supports us, without otkazny person, helps with Dima’s treatment. Thanks to it, we receive a preparation Afinitor. Thanks a lot, Evgenia Aleksandrovna.

Thank you to all Carter’s family and friends for so much love and support❤️

Всем спасибо!!!

…

Zarah has been always really well looked after by her amazing doctors in SCH.

Dr antoniuk sempre nos recebeu com muito carinho e atende muito bem a zarah qdo estamos no Brasil. Obrigada

Никитка пока сам не может разговаривать, но от его имени могу вас заверить, что он был бы благодарен своей большой и дружной семье – маме, папе, брату, сестре, бабуле, дедуле и др. Мы все нашего Никиту очень любим и стараемся сделать все что бы он не замечал своей болезни, жил как все здоровые дети и поскорее выздоравливал.

Vitalina, my daughter is sick TSC. We’re extremely glad about the fact, that she hasn’t abandoned us, though this disease is a great challenge to accomplish. Thanks to her, we have made many friends and managed to rediscover the world in all its beauty and vibrance of colour, far beyond the imagination of children, not stricken with such disease. Slowly, yet surely we try hard to learn something in this life. The diagnosis given at the 32nd week of pregnancy (officially at 3 months).

Спасибо всем, кто нам помогает!

1

ТС

Identical twins, Olivia and Delaney, were diagnosed at 5 days old with TSC. They would like to thank their family for all the love and support they have given over the last 8 years. They send a heart felt thank you to all their doctors and specialists in the Toledo, Ohio area. A big thanks to the teachers and staff, past and present, that have supported the twins’ medical and educational needs.

The Kent Elementary preschool team of teachers and staff have made each day more fun. They’ve kept me safe and given me plenty of giggles. Jennie, my paraeducator, makes sure every school day goes as smooth as possible. Getting out of the house and being around such positive, patient people is so important. Everyone kept up with my emergency seizure plans and IEP plans so well. Mom and Dad never worried when I was with you all. You are amazing people and a most excellent team.

Et’m patient with this post I want to make the world aware of diseases like I have to stop being unknown, and there is a cure

The Italian Association would like to thank everyone who has contributed to helping people with TSC

Aydan has changed everything about my life! He has shown me what it means to face life with courage, to be a warrior when times get tough, and to show love without words! Aydan has such a love of life that everyone who knows him can feel it!

HE IS MY HERO …. HE IS MY SON

Hero’s and teachers can come in all shapes and sizes. One of mine is 5’9″ and weights 186 lbs. He is my son! Almost 18 years ago my son was rushed to the hospital with, what I didn’t know at the time, were seizures. That day he was diagnosed with Tuberous Sclerosis. Needless to say the world stood still as I did my best to process this diagnosis. Tuberous Sclerosis, what the hell is that? Never in my life had I heard of this disorder. Well that was all about to

Я благодарна людям которые в трудные времена остаются людьми.

Дорофеева МЮ

With great appreciation to our doctor Marina Dorofeeva

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Daelene, with TSC, has changed my life by giving me a whole new look on life. I have so much more open compassion and love for others (particular ones with disabilities). I am involved and organized in a way to make life simple and easy so we can enjoy every moment. She has taught me how to live life and to live with a smile filled with real joy! I love her!

Dr Tonya Kara – was our Tsc Angel, Tonya is Courtney’s kidney specialist, Tonya found us floating in the NZ medical system, Tonya has been a huge part if us finally finding the best medical care we can for Courtney in NZ.
DR Tonya Kara is now helping TSC NZ to empower other doctors in NZ – thank u

hola, mi nombre es Evaristo, tengo 4 años, quiero agradecer a todas las personas y especialistas que han intervenido en la búsqueda de tratamientos y una mejor calidad de vida para los que tenemos esclerosis tuberosa. A mi Neuróloga pediatra Marisela Hernandez de la cdad de México, que esta al pendiente de mi evolución; a mis terapeutas del CRIT donde asisto, gracias por su perseverancia y que por ustedes he avanzado en mi desarrollo. A mi familia por su cariño y apoyo incondicional. GRACIAS!!

Emma and Maddi Christensen are my hero’s. They were both born with Tsc and everyday they show me just how strong they are. Everyday I am thankful for my two daughters! We will not give up til they find a cure!

This is Hannah and her step dad, David. Hannah has overcome so many challenges that she faces daily and is a true inspiration and such a strong little girl. In this picture, she is 7 days recovered from a two part brain surgery to hopefully cure her seizures. David races a stock car with the Tuberous Sclerosis Alliance logo on the hood, to honor Hannah and to raise awareness and funds for the Tuberous Sclerosis Alliance. We are proud to participate in TSC Global Awareness Day!

A special thank you to TS Alliance and TSCi for their determination and perseverance in spreading the knowledge about research in TSC and its treatments globally; for uniting researchers, doctors and organizations from around the world in an effort to work together toward finding a cure for TSC; and for working towards improving the lives of people with TSC around the world. Thanks to all of your efforts life with TSC has meaning!

Thanks to my daughter Haley, who has shown me courage, determination and strength since being diagnosed with a Giant Cell Astrocytoma at 6 months old. She has fought TSC every step of the way and for a girl they said wouldn’t live past 12, she’s doing pretty good at 26.

For being the BEST TEACHER, and ALWAYS believing in me! Love you!

We are thanking Dr Thomas Halperin. He was Audrey’s pediatrician when she was diagnosed with TSC at 4 mos old. Not only did he help get her diagnosed quickly, but he also gave me, as her mother, advice, that has guided me through countless tests, therapy and four brain surgeries. He said two things that every parent of a special needs child should hear: 1)Drs. are experts on medicine, but YOU are the expert on your child, and 2)Audrey doesn’t know anything’s wrong, so we won’t treat her that way

Trystan James age 27, pictured with dad Perry and mum Marie, both UK TSA Trustees. Our World of Thanks to TSC Researchers for giving families like ours hope for the future through emerging treatment options and ultimately a cure for those yet to be born with TSC. Thank You/ Diolch, Perry, Marie & Trystan James 🙂

Our family would like to thank John’s Early Intervention Physical Therapist, Laurie Keehn. Her patience, kindness, and dedication to John have allowed him to make wonderful strides. She has greatly impacted John’s development and helped him learn how to walk. He is now running, jumping and climbing thanks to Laurie. We are so fortunate that she came into John’s life when she did. We can’t thank her enough for her positive influence on John and support to our family.

We are so thankful for Dr. Thiele! Dr. Thiele is so much more than a doctor, and we feel truly blessed to have found her for our little Taylor. During our first visit with her, she filled us with love and hope and has provided the best care possible to Taylor ever since. She goes above and beyond and treats all of her patients as if they are a part of her family. She has devoted much of her life to helping those impacted with TS and we are thankful for her everyday!

They helped raise money so Lane could get a seizure alert dog!!! Thank you all so much!!

It is too hard to thank ONE person. I would like to thank everyone who has supported us, family, friends, doctors, nurses, therapists, & teachers.

My mom takes me to all of my doctors’ appointments. She comforts me if I am sad or scared. She helps and encourages me. She buys me nice things. She gives me awesome hugs!

My family is always there for me through every
Dr appointments and all my hospitalizations. I
Love them all!

Kari and I were best friends in high school and had lost contact after a high school reunion. I saw her in a video and was able to reconnect – she has shown us we can live in this TS world and has walked hand in hand with us – Guiding us with kindness, love, and compassion. Kari is our angel.

I thank my mom for being there for me and helping me continue to grow and live happily and healthy.

Being family

Being family

Being family

Being family

Being family

Being family

cambio por completo mi vida, es mi hijo y es el hombre mas valiente a pesar que esta muy afectado siempre tiene una sonrisa que regalar, hoy para mi la vida tiene otro sentido los pequeños detalles son los mas importantes..como le dice mucha gente Wilsito un ejemplo de vida.

We are thanking Jackson’s big brother and sister. They understand that their little brother will always need extra help, so they take time to help him learn, laugh and love. They will always be his biggest advocates.

Being family

Our mother taught us to embrace the journey living with Tuberous Sclerosis. Throughout the years and endless doctors appointments, my brother’s 2 major brain surgeries for his seizures, our mother has always been our hero <3 The strength, courage and unconditional love she has given us, have made us who we are today. For that, along with the endless support from our many loved ones, we couldn’t be more proud to be TS warriors! :0) We learned to only become stronger and wouldn’t change a thing <3

I think that Parker and Shelby would thank their daddy, Brett, for not being so scared of TSC that it kept him from wanting to have kids of his own. If he had, Parker and Shelby, both of whom have TSC, and their big brother, Harrison, who does not, would not be here today. Brett and his dad both have TSC and serve as great models to Parker and Shelby that TSC is not a road block to a wonderful life. (Completed by mommy, Melissa)

Спасибо друзьям!

Dr. Rosser has been amazing with us over the last four years. From the very beginning she has always been available for consult and immediately responds to any questions, emails or calls. Going way beyond the call of duty, she remembers everything about not only Ella but our whole family. Couldn’t ask for a better neurologist for my daughter and certainly never even imagined there was someone as wonderful as her out there. Thank you from all of the Sanders clan, Dr. Rosser!

Dr. Bloom was our fetal cardiologist. He explained TSC to us before my son was ever born. He was giving us devastating news that normally would have been a crushing blow….. But he knew exactly how to help us cope. His bedside manner and compassion will make me remember him forever!

A world of thanks to everyone involved with TSC who is dedicated to improving not only the quality of care available but also our quality of life.

My son just keeps going through everything. He has taught us that nothing in life is impossible.

Mia was diagnosed with tsc at 11 months luckily for us her epilepsy is well managed she does have learning and understand delay and require support at school , but she is the most loving caring child you will ever meet. All she wants is to dance be a princess she is always happy and we love her so much no matter what life throws at her she always has a smile .

TSC

These are my 4 kids. I want to thank Lily and Russell for being such a great brother and sister to their twin sisters, Annie & Audrey (who both have TSC. They are kind, compassionate, helpful, patient and loving toward their own sisters but also toward anyone who is different.

We have too many people to thank. We have the TSC alliance of greater Kansas City, Redeemer Lutheran Church, and many more who have helped raise awareness and funds to help pay for medical needs. Also being there to support us through the good times and bad.

My daughter has made me a better person! I am so thankful for her every day! We love you Emily!

A big thanks to all our friends, family, doctors, nurses, teachers & therapists who support Charlotte. We truly appreciate the donations, kind words & extra help!

Jane, has been a constant support for me and Tara every day. From emotional support, to hands on practical help and fundraising too. We would be lost without her. She is always there for us.
Linda (Tara’s mum)

Dr. Patterson has been a wealth of knowledge, support and guidance from the very beginning of our journey. He has always believed in my son, even when no one else did. He taught me to trust my instincts and built confidence in me which has turned me into the advocate for my son that I am today. He has a special place in all of our hearts!

Bästa vänner som spelar innebandy. Matilda (till höger)tackar sin bästa vän Josefin för att hon finns!
Best friends playing floorball. Matilda (to the right)thanks her friend Josefin for being there!

Our Nikko, Our Hero we are blessed everyday to have him in our lives.

Jan is our anchor and connection through the bumpy navigation of the complex medical world of TSC. Words cannot express how appreciative we are of Jan.

My nephew Cole has overcome many obstacles in his life yet he doesn’t seem to stop. He is rambunctious and entertaining all at the same time. He is a 7 year old boy who loves being a kid no matter what is placed in front of him. I don’t see him giving up anytime soon. I a proud to call Cole DenHarder my nephew and godson! I love him so much.

Our daughter Alyssa was diagnosed with TSC when she was four months old. We want to thank our family, friends and coworkers for their wonderful support during our journey!

Маме спасибо!

TENGO UN BEBE DE DOS AÑOS QUE LE DIAGNOSTICARON A LOS SEIS MESES DE NACIDO ESCLEROSIS TUBEROSA Y HE BUSCADO AVANCES O PERSONAS QUE PUDIERAN ACTUALIZARME SOBRE ESTA ENFERMEDAD Y ASI MISMO COMPARTIRME SUS EXPERIENCIAS CON LA MISMA… ESPERO SABER PRONTO DE USTEDES MI NUMERO DE CONTACTO Y WHATSAPP 2311210877 O POR FACE SUJEMY YANERY GUARNEROS

Honey has made me humble and proud from the day she was born. She is a true fighting spirit, amusing and teaching me at every turn with her innocence, love, patience and quirks. She is an amazing sister to Tommi and aunt to Mason. I am proud to be her dad. Thank you for choosing us all as your family x YOU ROCK x

My husband and co-workers are the people who cares about me and my condition. Thanks again!

My Mom (mona), has impacted my life through all of the support she has given me throughout the years. She has been understanding and helpful in terms of my medical history and with all of my appointments. She assists with everything, from prescribed medicine to treatments. This is also to extend my thanks to my Neurologist, Dr. Zankar..for staying involved and active in all of my medical needs. He knows what signs to look for and is obervant. He has been a HUGE help and a great doctor.

My Aunt Linda, GeeGee and Nana help my mommy and daddy so much. There is no one thing that they do; it’s every little thing that makes them so special. They are my mommy and daddy’s support system. We don’t know what we would do without them.

The TS Alliance Staff goes above and beyond for the families affected by TSC.

My beautiful little niece is a little over 1 now and her beautiful smile is so contageous. On a bad day we think of her and her smiles and she brightens up our day. Shes our little sunshine!!

Sean(in rocking chair) would like to give thanks to his teacher (Ms. Moxey), EA’s (Ms. Jones & Mr. Palmer), staff & students/classmates at Mckenzie Smith Bennett Pulic School in Acton, Ontario for their tremendous support on a daily basis. Your “inclusion” is amazing! Thank you for setting the bar high & always believing. From our family to all of you – a huge heartfelt THANK YOU!

Моя дочь – Мельникова Мария

I owe gratitude to all the amazing family and friends that have supported me on my journey with TSC. I am truly thankful for your love and you inspire me to do more for others living with TSC.

TS Canada’s awareness day was brought to the tower’s attention by the other Light it up Blue! campaigns in the city and from a staff member’s youngest sister, Ewen Barclay, who has TS. Skylon Tower lit up blue for May 15 on the awareness day!

We’re thanking Dr Lakshmi Nagarajan from Princess Margaret Hospital. She and her neurology team together provide great care for our children and have been very supportive of our group of families. Lakshmi has given her time to speak to us about new research in Tuberous Sclerosis at our Global Awareness Day event.

FECOER Is for me a big support. With they I can get more politic benefits for to work in Colombia for my Brother and Sister With CET.

Thanks Dr Krueguer

My son has tsc age 9 years.treatment india.but doctor are suggest medicine no available in india please help my son.