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National Tuberous Sclerosis Association Inc

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Nonprofit Overview

Causes: Health

Mission:

Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex while improving the lives of those affected.

 

Geographic areas served: Nationwide

Programs: 1. Family Services develops programs and services that provide individuals with tuberous sclerosis crisis counseling and direct access to the information, resources and specialists experienced in the diagnosis, treatment, and management of tuberous sclerosis.2. Research stimulates and supports genetic, clinical and basic research into the various manifestations of tuberous sclerosis to further the development of genetic testing, gene therapy and clinical therapies.3. Public Health Education heightens awareness of tuberous sclerosis throughout the general public to broaden the scope of support and understanding beyond the tuberous sclerosis individuals and their families.4. Professional Education expands programs targeting those specialists who treat patients with tuberous sclerosis, medical students, genetic counselors and educators to minimize the tragic consequences of ignorance and misinformation.5. Government Relations focuses on obtaining federal resources for tuberous sclerosis research, clinical care and information dissemination.

Community Stories

137 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

The TS Alliance has been there for my family since my son was diagnosed with TSC. We are eternally grateful for all that they do to support our family along with so many others. Progress is being made through research and my son has benefited from this. There is still more to do and I'm glad the TS Alliance is leading the way!

Julie295

Board Member

Rating: 5

In 2009 my daughter was diagnosed with Tuberous Sclerosis Complex. We have no family history and had never heard of the disorder. Thankfully we found the Tuberous Sclerosis Alliance and they helped us navigate through the diagnosis and beyond. We’ve been involved in the TS Alliance ever since then and quite frankly don’t know what we would do without them. The work they do on behalf of all TSC families and the progress they’ve made towards a cure and improving the lives of those affected is astounding. I’m honored to be a new member of the Board and thankful for the important work they do every day for TSC families.

1

Volunteer

Rating: 5

We were connected with the TS Alliance shortly after our daughter was diagnosed with TSC1 in 2014. This is amazing organization and we were so grateful to get connected with them! They have helped us connect with other TSC families nationwide & top TSC clinics. We are advocates & volunteers with this organization. They listen to our feedback and always provide assistance when we reach out to them. Each year we travel to Washington, DC to lobby for federal funding with their guidance & help for the TSCRP. We feel like we are a part of a family & can make a difference to find a cure. Thank you TS Alliance for everything you do for our daughter, our family and our TS community!!

1 Karren N.

Volunteer

Rating: 5

My son, Joel, was diagnosed with Tuberous Sclerosis Complex when he was 7 months old. I discovered the TS Alliance website a few weeks after receiving Joel's diagnosis, and I instantly gained a community of support. Joel is now 6 years old, and the TS Alliance continues to be the greatest resource for educating myself and others about his disease.

1

Volunteer

Rating: 5

TS Alliance has a fantastic mission and helps a very deserving group of people. The staff and leadership are first class and I know every dollar I give is being used to the max for mission.

1 Matthew79

Volunteer

Rating: 5

The Tuberous Sclerosis Association has been an incredible resource for our family in a very challenging time in our lives. And, they continue to be a great resource and to do the good work of spreading awareness, advocating for us and helping to raise funding for research.

Client Served

Rating: 4

My son was diagnosed in 1997 and every since then, the TS Alliance has been a source of information, support, research and hope for our family. Our lives and journey with tuberous sclerosis complex has been greatly enriched by this worthy and responsible organization, and we are grateful.

3 Amy_54

Volunteer

Rating: 5

We would be so lost if it weren't for the Tuberous Sclerosis Alliance. The organization does an excellent job educating people affected with the disease and raising awareness with the general public. They have the most accurate information about the disease on their website, and most importantly, money raised through the organization has resulted in a medication that has drastically improved my little girl's life. Notice the improvement in her kidneys since being on Afinitor. The white blobs are cysts.

Previous Stories
1

Client Served

Rating: 5

My daughter, Chloe, was diagnosed with tuberous sclerosis just before her 4th birthday, when she started having seizures. The doctors told us right away to visit the TS Alliance's website and said that is where we will find the most accurate information on the disease. If it weren't for the TS Alliance, I don't know where we would be today. If it weren't for all the money they raise that goes toward research, Chloe would probably be in a lot worse shape today, and I'm sure her life has been extended thanks to their hard work. We are thrilled to be able to raise as much money as we can for the alliance because we know it will benefit Chloe and others who have TS.

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1

General Member of the Public

Rating: 5

The Tuberous Sclerosis Alliance had provided us with invaluable support over the years. Both our children fight TSC. We are so thankful for the resources provide by the TS alliance and by their dedication to lifesaving research. We have benefited immensely. Thank you TS Alliance.

keithah

Donor

Rating: 5

As an individual with TSC, I have been both the beneficiary of the organization's research initiatives and educational programs as well as an enthusiastic volunteer helping it achieve its mission. It is quite remarkable to consider the achievements realized in the 40 plus years of its existence with the discovery of defective genes responsible for this disorder along with treatments to make the disease less burdensome. While no one would ever TSC on anyone, this group does so much for its community to make living with TSC more manageable. It is my ongoing honor to be involved with an organization that makes such a difference to those whose lives are affected.

Previous Stories
4

Board Member

Rating: 5

The TS Alliance must be the first stop and is the best place for those individuals and families living lives impacted by Tuberous Sclerosis Complex. Through its direct efforts, it is only one of a handful of rare diseases with a FDA approved medication for a manifestation of the genetic disorder. In our case two meds and hopefully more on the way. My life is different and better because I got involved with the TS Alliance

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General Member of the Public

Rating: 5

Hearing the diagnosis of tumors growing in your child's body is one of the scariest moments in your life. The Tuberous Sclerosis Alliance was there to educate and support us when we didn't know where to turn.
The Tuberous Sclerosis Alliance keeps us informed on information, treatments, and ongoing clinical trials. We don't know what we would do without their information and support.

2 Shannon66

Volunteer

Rating: 5

We first found the ts alliance almost 14 years ago when my daughter was diagnosed with Tuberous Sclerosis Complex. Since then we have had two more children diagnosed with TSC as well as my husband. To have a non-profit committed to awareness, support, research and ultimately finding a cure is incredible. Over the years the TS Alliance has guided us through this journey and also given us the opportunity to give back and help other adults and families affected by TSC. Rob is 39, Rylee is 15, Jake is 12 and Luke is 9. Each battles TSC daily with different manifestations and different levels of severity. The TS Alliance gives us hope that one day TSC will not dictate every decision my children make. I have no words for how extremely grateful I am for TS Alliance and all they do for those of us living with TSC.

Previous Stories
1

Volunteer

Rating: 5

My husband and 3 children all have TSC. When my daughter was first diagnosed over 12 years ago we had never heard of Tuberous Sclerosis Complex. We were scared and felt very alone, until we connected with the TS Aliance. Over the years the TS Alliance has been a constant support. They have educated us, encouraged us and helped us connect with others traveling a similar path. I am truly grateful for the TS Alliance and all it does for those of us living with TSC. Because of the amazing strides and support I have hope my kids will have a brighter future!

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moml

Client Served

Rating: 5

Our daughter was diagnosed with TS at age 5. The TS Alliance has been a lifeline of support, medical research, education for teachers & medical personnel. They have helped parents advocate for their children in schools and financial resources. The staff is professional and always friendly. They have a wealth of published materials, much in Spanish also. they have helped us parents & grandparents to raise millions of dollars for research, and helped parents plan for care for a dependent child after the parents pass on. The director Kari Rosbeck is a tireless lobbyist, traveler, and promoter. God bless the TSA for all they've done!

Previous Stories

Volunteer

Rating: 5

Our daughter was diagnosed after infantile spasms at 9 months. We were overwhelmed with the possible effects of her disease, but the NTSA (Now TS Alliance) was a lifeline of information, research, referrals, & hope. Because of their research, a drug was found to stabilize our daughter, who had had 12 surgeries in 5 years, on her kidneys, lungs, & uterus. Her life expectancy has been stretched beyond the 35 years she was given, and she has not needed surgery for several years. We feel we owe the TS Alliance her life. She has served as a board member, and was given a Volunteer of the Year Award for her work . I have distributed in SD information folders prepared by the Alliance for dermatologists, neurologists, pediatricians, & elementary & middle school teachers, and contacted families in SD who requested a contact. This is a well-run organization staffed by caring, intelligent, energetic people. Their lobbing efforts in Congress have kept research dollars coming, & my daughter & I also lobbied.

Susan210

Client Served

Rating: 5

Everyone there is like family! They go above and beyond to help our community! I couldn't ask for a better group of people to have on our side!

Previous Stories

Volunteer

Rating: 5

When my 14-year-old son was diagnosed at 2 months of age I had never heard of tuberous sclerosis complex. My husband and I were shocked and scared. We didn't know what to expect. We were very fortunate that our son's geneticist had recently been to a conference where he learned about TSC and referred us to the NTSA, now the TS Alliance. I have met some of the greatest people I have the honor of calling friends who not only shared their stories with me but also helped me get through those tough times of seizures with my son. The TS Alliance does more than just raise awareness and funding for research - they also connect adults and families of children with others so that we don't have to go through it alone. These people are genuine in their caring for the community and in their commitment to finding a cure!

1 Kathi7

Client Served

Rating: 5

I have been involved with this organization for the past 35 years after my son was diagnosed with Tuberous Sclerosis Complex. I have seen it evolve over the years from a "parent support" group to an organization that is committed to helping TSC patients and their families and to finding a cure for this difficult disease. They are a great organization! Their President and her staff are all great workers who put in 100+% to helping our cause!

Previous Stories

Volunteer

Rating: 5

The TS Alliance is a great organization! I am the parent of a 35-year-old son with TSC and have been involved with this organization for 33 years. For the past few years, I have been a volunteer in the National Office and have witnessed the expertise of the staff, as well as their integrity in helping support the members of the TSC community. They give support to newly diagnosed individuals, as well as others who are going through the various stages of the disease. They encourage community involvement by having many types of activities and different fundraising events to help raise awareness and funds for research.

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Bridget21

Volunteer

Rating: 5

My involvement with the Tuberous Sclerosis Alliance started when I learned about a co-workers daughter that was diagnosed with tuberous sclerosis complex. I started volunteering with their annual walk and continue to help where ever I can. The employees and volunteers at the TS Alliance are very welcoming and quickly feel like family. Each and every person I have come in contact with truly focuses on helping others and improving the lives of TSC patients. They work hard to make sure that finances are focused more on activities such as outreach and research than on administrative costs. I know my time spent with this organization is for a great cause that truly cares about and gives back to the TSC community.

General Member of the Public

Rating: 5

Always delivers solid information that is site sourced and current. Provides expertise and depth on a subject that is often not covered in mainstream media. Has done an outstanding job in shining a national spotlight on a disease that is confusing and heart wrenching in its complexity.

Professional with expertise in this field

Rating: 5

The Tuberous Sclerosis Alliance has accomplished amazing things for patients and families. For an organization tackling a rare disease, they function like a large, sophisticated organization, allocating resources, education and programming toward initiatives that truly make a difference. They are funding innovative research for a better tomorrow, while providing support & education today. Look no further than its TS Awareness Month campaign, local education events and walks, and recent Infantile Spasms Awareness Week campaign to see how impactful this organization has been and will continue to be. Great leadership.

1

General Member of the Public

Rating: 5

TS Alliance has helped in so many ways. They have helped increase my knowledge and also helped with finding resources. My daughter is affected by TSC2 in many ways (cortical tubers, subependymal nodules, SEGAS, cardiac rhabdomyomas, skin lesions, eye lesions, developmental delay, seizures, etc). She has had brain surgery to help with the seizures. Along the way, I have used TSA as a resource without having to question whether the information provided was legit. It has helped me to provide the best care possible. As a nurse and soon to be FNP, I recognize the importance of prevention. The TS Alliance has helped me prevent situations and allow others to prevent a bad scenario all by increasing our knowledge and resources. This is key to helping our healthcare system improve.

1

Client Served

Rating: 5

When my baby was diagnosed with tuberous sclerosis, the Tuberous Sclerosis Alliance was there for us from day one. Their staff sent me long emails answering any questions I had, their website has really helpful information, and they seem to care so much about the people affected by this disease. I've worked in nonprofits for 10 years, and this is a top-notch organization.