The state has officially approved funding for the TSC Center of Maryland. We are currently coordinating with the University of Maryland Medical Center to finalize the integration of the new telemedicine programs. Thank you for maintaining the pressure that secured this outcome.
October 27, 2018
Final supporters
FOR MARYLAND RESIDENTS ONLY
Dear Governor Hogan,
We, the undersigned residents of Maryland, are writing in request of funding to establish a comprehensive Tuberous Sclerosis Complex (TSC) Center of Maryland. Located at the University of Maryland School of Medicine (UMSOM) and University of Maryland Medical Center (UMMC), this center would promote translational scientific research and accessible patient care for those impacted by TSC. An estimated 1,000 people in our state are affected by TSC and currently Maryland only has one dedicated TSC Clinic for adult patients, involving a multidisciplinary coalition of physicians, nurses, and other staff members focused on the care of TSC patients.
A unique feature of this initiative would be the implementation of telemedicine programs to serve patients throughout Maryland, including those in underserved rural areas or for whom traveling poses an undue risk, which is often the case for individuals with severe behavioral challenges or advanced lung disease associated with TSC. The TSC Center of Maryland would have an integrated program in all aspects of research and patient care in TSC, spanning basic drug development in the laboratory, clinical research in neurogenetics, and comprehensive clinical care of TSC patients.
Tuberous sclerosis complex (TSC) is a genetic disorder that involves growth of tumors or other abnormalities in multiple organs of the body, including the brain, skin, eye, heart, lungs, and kidneys. The most disabling conditions associated with TSC include seizures, developmental delay, and autism. Although TSC is not widely recognized by the general public, TSC has a similar prevalence as the better-known neurological disease, Duchenne’s muscular dystrophy, and is more common than ALS (Lou Gehrig’s disease). Over the past decade, there have been ground-breaking scientific advances into the genetics and biochemistry causing TSC, leading to novel FDA-approved treatments specifically for this disorder. Furthermore, discoveries and treatments relevant to TSC are believed to have much broader relevance for other common diseases, such as epilepsy, autism, and cancer. Thus, TSC is often viewed as a “model disease” in utilizing and promoting the benefits and interactions of medical research and clinical care that can be applied to other neurological disorders causing epilepsy and autism.
The University of Maryland is well-poised and well-suited to develop a comprehensive TSC Center combining laboratory-based research and clinical care expertise to focus on the devastating neurological features of TSC including epilepsy and autism.
We urge you and your colleagues at the Maryland State House to support funding for the development of the TSC Center of Maryland. It is essential for the TSC community of Maryland and would serve those who suffer from not only TSC but its related diseases as well.
Thank you for your thoughtful consideration of this request,
Updates
September 14, 2018
The petition just reached 500 signatures. I am documenting these names to include in the formal briefing package I am preparing for the University of Maryland medical leadership.
Reached 500 supporters
September 12, 2018
September 10, 2018
We are approaching the 500 signature threshold required to demand a formal review from the Governor's office. Please direct your network to the petition page now so we can finalize the delivery packet by the end of this cycle. Reaching this milestone ensures that our request for the TSC Center is prioritized during upcoming budget deliberations.
Reached 100 supporters
August 14, 2018
August 13, 2018
We are approaching one hundred signatures which provides the baseline data needed for my scheduled briefing with the hospital administration. Please circulate this link to Maryland residents today so we can present a stronger case during our upcoming meeting with state health officials.
8 Comments
PLEASE fund this center. Traveling so far for appointments is impossible for us and so many others.
Thinking of all the brave families fighting this. We need this facility now!
My nephew has TSC and it is so hard to find good doctors nearby. Maryland really needs this center to help our families.
God bless all the families dealing with this. Sending love to everyone impacted by TSC.
Do the right thing Governor Hogan. These kids deserve better care close to home.
God Bless these kids and their families
Let’s do this for Brynleigh!
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The state has officially approved funding for the TSC Center of Maryland. We are currently coordinating with the University of Maryland Medical Center to finalize the integration of the new telemedicine programs. Thank you for maintaining the pressure that secured this outcome.
October 27, 2018
Final supporters
FOR MARYLAND RESIDENTS ONLY
Dear Governor Hogan,
We, the undersigned residents of Maryland, are writing in request of funding to establish a comprehensive Tuberous Sclerosis Complex (TSC) Center of Maryland. Located at the University of Maryland School of Medicine (UMSOM) and University of Maryland Medical Center (UMMC), this center would promote translational scientific research and accessible patient care for those impacted by TSC. An estimated 1,000 people in our state are affected by TSC and currently Maryland only has one dedicated TSC Clinic for adult patients, involving a multidisciplinary coalition of physicians, nurses, and other staff members focused on the care of TSC patients.
A unique feature of this initiative would be the implementation of telemedicine programs to serve patients throughout Maryland, including those in underserved rural areas or for whom traveling poses an undue risk, which is often the case for individuals with severe behavioral challenges or advanced lung disease associated with TSC. The TSC Center of Maryland would have an integrated program in all aspects of research and patient care in TSC, spanning basic drug development in the laboratory, clinical research in neurogenetics, and comprehensive clinical care of TSC patients.
Tuberous sclerosis complex (TSC) is a genetic disorder that involves growth of tumors or other abnormalities in multiple organs of the body, including the brain, skin, eye, heart, lungs, and kidneys. The most disabling conditions associated with TSC include seizures, developmental delay, and autism. Although TSC is not widely recognized by the general public, TSC has a similar prevalence as the better-known neurological disease, Duchenne’s muscular dystrophy, and is more common than ALS (Lou Gehrig’s disease). Over the past decade, there have been ground-breaking scientific advances into the genetics and biochemistry causing TSC, leading to novel FDA-approved treatments specifically for this disorder. Furthermore, discoveries and treatments relevant to TSC are believed to have much broader relevance for other common diseases, such as epilepsy, autism, and cancer. Thus, TSC is often viewed as a “model disease” in utilizing and promoting the benefits and interactions of medical research and clinical care that can be applied to other neurological disorders causing epilepsy and autism.
The University of Maryland is well-poised and well-suited to develop a comprehensive TSC Center combining laboratory-based research and clinical care expertise to focus on the devastating neurological features of TSC including epilepsy and autism.
We urge you and your colleagues at the Maryland State House to support funding for the development of the TSC Center of Maryland. It is essential for the TSC community of Maryland and would serve those who suffer from not only TSC but its related diseases as well.
Thank you for your thoughtful consideration of this request,
Updates
September 14, 2018
The petition just reached 500 signatures. I am documenting these names to include in the formal briefing package I am preparing for the University of Maryland medical leadership.
Reached 500 supporters
September 12, 2018
September 10, 2018
We are approaching the 500 signature threshold required to demand a formal review from the Governor's office. Please direct your network to the petition page now so we can finalize the delivery packet by the end of this cycle. Reaching this milestone ensures that our request for the TSC Center is prioritized during upcoming budget deliberations.
Reached 100 supporters
August 14, 2018
August 13, 2018
We are approaching one hundred signatures which provides the baseline data needed for my scheduled briefing with the hospital administration. Please circulate this link to Maryland residents today so we can present a stronger case during our upcoming meeting with state health officials.
8 Comments
God Bless ALL the children and families that are going through this terrible disease. We need a cure and support for these beautiful people. Here's a wink for you Brynleigh, you and your parents have brought this to the forefront to get the attention of the public and public representatives.
PLEASE fund this center. Traveling so far for appointments is impossible for us and so many others.
Thinking of all the brave families fighting this. We need this facility now!
My nephew has TSC and it is so hard to find good doctors nearby. Maryland really needs this center to help our families.
God bless all the families dealing with this. Sending love to everyone impacted by TSC.
Do the right thing Governor Hogan. These kids deserve better care close to home.
God Bless these kids and their families
Let’s do this for Brynleigh!
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God Bless ALL the children and families that are going through this terrible disease. We need a cure and support for these beautiful people. Here's a wink for you Brynleigh, you and your parents have brought this to the forefront to get the attention of the public and public representatives.