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in their SCN1A
2021 DSF CONFERENCE
2021 DSF Family & Professional Conference Join us on June 24-26, 2021! Research and new treatments continue to move forward in the field of Dravet syndrome. With the postponement of our 2020 event due to the pandemic, we wanted to offer a virtual learning opportunity to bridge ADENOVIRUS VACCINES & GENE THERAPY Adenovirus Vaccines and Gene Therapy There has been some worry in the rare disease communities about the approaches that COVID-19 vaccines are using and how they may interact with future gene therapy approaches for specific disorders. Two of the current vaccines approved in the United States (Moderna and Pfizer) use RNA enclosed ina lipid droplet.
WHAT IS DRAVET SYNDROME? Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. Previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), it affects 1:15,700 individuals, 80% of whom have a mutation in their SCN1A gene .GENE THERAPY
Gene replacement therapy uses the casing of a virus, a viral vector, to deliver DNA that encodes a healthy copy of the mutated gene to cells. However, this approach has proven difficult in Dravet syndrome because the SCN1A gene is quite large and that amount of DNA cannot fit in commonly used delivery vectors.ICD-10 CODES
Specific ICD-10 codes for Dravet syndrome went into effect on October 1, 2020 (FY2021). ICD-10 codes are used by medical providers to track health statistics about diseaseand to assist in billing. It is important for a rare disease like Dravet syndrome to have its SOTICLESTAT TRIAL UPDATE Clinical Trial Update Soticlestat (TAK-938/OV935) Ovid Therapeutics recently presented updates on their clinical trials of soticlestat (TAK-935/OV935) at the American Academy of Neurology virtual meeting for their adult DEE cohorts. Soticlestat targets the cholesterol pathway by inhibiting the enzyme CH24H (cholesterol 24-hydroxylase), which produces 24HC (24-hydroxycholesterol). WhenFIND A DOCTOR
Dravet Syndrome Foundation, Inc. PO Box 3026 Cherry Hill, NJ 08034 P 203-392-1955 *Calls are processed through Google voice and then distributed to staff members, so it may take 24-48 hours for a NATURAL HISTORY STUDY OF CHILDREN WITH DRAVET SYNDROME Children aged 6 months to 60 months with a confirmed SCN1A-mutation and a clinical diagnosis of Dravet syndrome. Participants must have had seizure onset between the age of 3 and 15 months and normal development prior to the first seizure. The first figure below gives a high-level overview of the study ( image provided by EncodedTherapeutics ).
HOME - DRAVET SYNDROME FOUNDATIONABOUTPATIENTS & CAREGIVERSPROFESSIONALSJOINDONATEDSF RESEARCH GRANT PROGRAM Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in DRAVET SYNDROME IN ADULTS Dravet Syndrome in Adults Characteristics of Adult Patients Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. Previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), it affects 1:15,700 individuals, 80% of whom have a mutationin their SCN1A
2021 DSF CONFERENCE
2021 DSF Family & Professional Conference Join us on June 24-26, 2021! Research and new treatments continue to move forward in the field of Dravet syndrome. With the postponement of our 2020 event due to the pandemic, we wanted to offer a virtual learning opportunity to bridge ADENOVIRUS VACCINES & GENE THERAPY Adenovirus Vaccines and Gene Therapy There has been some worry in the rare disease communities about the approaches that COVID-19 vaccines are using and how they may interact with future gene therapy approaches for specific disorders. Two of the current vaccines approved in the United States (Moderna and Pfizer) use RNA enclosed ina lipid droplet.
WHAT IS DRAVET SYNDROME? Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. Previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), it affects 1:15,700 individuals, 80% of whom have a mutation in their SCN1A gene .GENE THERAPY
Gene replacement therapy uses the casing of a virus, a viral vector, to deliver DNA that encodes a healthy copy of the mutated gene to cells. However, this approach has proven difficult in Dravet syndrome because the SCN1A gene is quite large and that amount of DNA cannot fit in commonly used delivery vectors.ICD-10 CODES
Specific ICD-10 codes for Dravet syndrome went into effect on October 1, 2020 (FY2021). ICD-10 codes are used by medical providers to track health statistics about diseaseand to assist in billing. It is important for a rare disease like Dravet syndrome to have its SOTICLESTAT TRIAL UPDATE Clinical Trial Update Soticlestat (TAK-938/OV935) Ovid Therapeutics recently presented updates on their clinical trials of soticlestat (TAK-935/OV935) at the American Academy of Neurology virtual meeting for their adult DEE cohorts. Soticlestat targets the cholesterol pathway by inhibiting the enzyme CH24H (cholesterol 24-hydroxylase), which produces 24HC (24-hydroxycholesterol). WhenFIND A DOCTOR
Dravet Syndrome Foundation, Inc. PO Box 3026 Cherry Hill, NJ 08034 P 203-392-1955 *Calls are processed through Google voice and then distributed to staff members, so it may take 24-48 hours for a NATURAL HISTORY STUDY OF CHILDREN WITH DRAVET SYNDROME Children aged 6 months to 60 months with a confirmed SCN1A-mutation and a clinical diagnosis of Dravet syndrome. Participants must have had seizure onset between the age of 3 and 15 months and normal development prior to the first seizure. The first figure below gives a high-level overview of the study ( image provided by EncodedTherapeutics ).
ICD-10 CODES
Specific ICD-10 codes for Dravet syndrome went into effect on October 1, 2020 (FY2021). ICD-10 codes are used by medical providers to track health statistics about diseaseand to assist in billing. It is important for a rare disease like Dravet syndrome to have itsNEWLY DIAGNOSED
Receiving a diagnosis of Dravet syndrome can be overwhelming and may leave a family with many unanswered questions. Much of the general information you will find may be out of date, based on studies done on people who were diagnosed clinically at an older age and who did not have the benefits of therapeutic interventions and knowledge that we have available today.FIND A DOCTOR
Dravet Syndrome Foundation, Inc. PO Box 3026 Cherry Hill, NJ 08034 P 203-392-1955 *Calls are processed through Google voice and then distributed to staff members, so it may take 24-48 hours for a VIDEOS - DRAVET SYNDROME FOUNDATION Dravet Syndrome Foundation, Inc. PO Box 3026 Cherry Hill, NJ 08034 P 203-392-1955 *Calls are processed through Google voice and then distributed to staff members, so it may take 24-48 hours for aresponse.
NATURAL HISTORY STUDY OF CHILDREN WITH DRAVET SYNDROME Children aged 6 months to 60 months with a confirmed SCN1A-mutation and a clinical diagnosis of Dravet syndrome. Participants must have had seizure onset between the age of 3 and 15 months and normal development prior to the first seizure. The first figure below gives a high-level overview of the study ( image provided by EncodedTherapeutics ).
AWARENESS MONTH
2021 KEY DATES: April 9-30: Join the Fight t-shirt campaign (will ship around 5/18) June 1: Dravet Awareness Month Kick-off. June 15: 1st annual Dravet Remembrance Day. June 23: International Dravet Syndrome Awareness Day. Your support and hard work has been instrumental in the progress made for our patient community in the last decade. DRAVET SYNDROME AT AES 2020: A REVIEW Dravet Syndrome at AES 2020: A Review. Today’s blog post is a review of some of the topics relevant to Dravet syndrome that were presented at the annual American Epilepsy Society (AES) meeting. This was my first year attending the AES meeting and also the first year the meeting was held virtually. I learned so much and was excited by the 2021 VIRTUAL TOTE GROUP 2 ARCHIVES DSF Family Network; DSF Parent Support Groups; Patient Assistance Grants; DSF Birthday Buddies Club; Super Siblings Club; Patient-Centered Research; Bereavement GREENWICH BIOSCIENCES DSF Family Network; DSF Parent Support Groups; Patient Assistance Grants; DSF Birthday Buddies Club; Super Siblings Club; Patient-Centered Research; Bereavement REMEMBERING CHARLOTTE Remembering Charlotte. Our community is mourning the loss of a special little girl, Charlotte Figi, who had. Dravet syndrome and bec ame the face of CBD and the cannabis legalization movement. She touched so many lives in her 13 short years, changed so many minds, and empowered her mom, Paige Figi, to move such enormous mountains that it feels2021 DSF CONFERENCE
2021 DSF Family & Professional Conference Join us on June 24-26, 2021! Research and new treatments continue to move forward in the field of Dravet syndrome. With the postponement of our 2020 event due to the pandemic, we wanted to offer a virtual learning opportunity to bridgeGENE THERAPY
Gene replacement therapy uses the casing of a virus, a viral vector, to deliver DNA that encodes a healthy copy of the mutated gene to cells. However, this approach has proven difficult in Dravet syndrome because the SCN1A gene is quite large and that amount of DNA cannot fit in commonly used delivery vectors. ADENOVIRUS VACCINES & GENE THERAPY Adenovirus Vaccines and Gene Therapy There has been some worry in the rare disease communities about the approaches that COVID-19 vaccines are using and how they may interact with future gene therapy approaches for specific disorders. Two of the current vaccines approved in the United States (Moderna and Pfizer) use RNA enclosed ina lipid droplet.
SOTICLESTAT TRIAL UPDATE Clinical Trial Update Soticlestat (TAK-938/OV935) Ovid Therapeutics recently presented updates on their clinical trials of soticlestat (TAK-935/OV935) at the American Academy of Neurology virtual meeting for their adult DEE cohorts. Soticlestat targets the cholesterol pathway by inhibiting the enzyme CH24H (cholesterol 24-hydroxylase), which produces 24HC (24-hydroxycholesterol). When2020 GRANT AWARDS
2020 Grant Awards. DSF is dedicated to funding the highest caliber research on Dravet syndrome and associated epilepsies. Our focus is on research projects that will find new treatments and improve the quality of life for those living with an ion channel epilepsy. We place a high priority on funding research that has a clear path togenetic
DASH FOR DRAVET
DASH FOR DRAVET ON TURKEY DAY. Make it a Thanksgiving Day tradition! It’s fun and It’s easy! 1. Register below then set up your personal fundraising page! 2. You will receive a race bib and custom DSF neck gaiter. 3. Ask your family and friends across the country to join you by creating their own fundraiser at www.dashfordravet.org. STOKE THERAPEUTICS LAUNCHES MONARCH STUDY A new type of medicine, STK-001, designed by Stoke Therapeutics increases healthy copies of the Nav1.1 sodium channel in pre-clinical animal and cell models. Stoke Therapeutics is now enrolling for the MONARCH study to assess if this works as a treatment for patients with Dravet syndrome. STK-001 is an anti-sense oligonucleotide (ASO). DRAVET SYNDROME AT AES 2020: A REVIEWSUPPORT GROUPS
They also are grieving and need support and understanding. The vision of Dravet Syndrome Foundation is to help researchers find ways to one day prevent or cure Dravet syndrome and related ion channel epilepsies so that future generations do not have to face the devastation ofthese diseases.
REMEMBERING CHARLOTTE Remembering Charlotte. Our community is mourning the loss of a special little girl, Charlotte Figi, who had. Dravet syndrome and bec ame the face of CBD and the cannabis legalization movement. She touched so many lives in her 13 short years, changed so many minds, and empowered her mom, Paige Figi, to move such enormous mountains that it feels2021 DSF CONFERENCE
2021 DSF Family & Professional Conference Join us on June 24-26, 2021! Research and new treatments continue to move forward in the field of Dravet syndrome. With the postponement of our 2020 event due to the pandemic, we wanted to offer a virtual learning opportunity to bridgeGENE THERAPY
Gene replacement therapy uses the casing of a virus, a viral vector, to deliver DNA that encodes a healthy copy of the mutated gene to cells. However, this approach has proven difficult in Dravet syndrome because the SCN1A gene is quite large and that amount of DNA cannot fit in commonly used delivery vectors. ADENOVIRUS VACCINES & GENE THERAPY Adenovirus Vaccines and Gene Therapy There has been some worry in the rare disease communities about the approaches that COVID-19 vaccines are using and how they may interact with future gene therapy approaches for specific disorders. Two of the current vaccines approved in the United States (Moderna and Pfizer) use RNA enclosed ina lipid droplet.
SOTICLESTAT TRIAL UPDATE Clinical Trial Update Soticlestat (TAK-938/OV935) Ovid Therapeutics recently presented updates on their clinical trials of soticlestat (TAK-935/OV935) at the American Academy of Neurology virtual meeting for their adult DEE cohorts. Soticlestat targets the cholesterol pathway by inhibiting the enzyme CH24H (cholesterol 24-hydroxylase), which produces 24HC (24-hydroxycholesterol). When2020 GRANT AWARDS
2020 Grant Awards. DSF is dedicated to funding the highest caliber research on Dravet syndrome and associated epilepsies. Our focus is on research projects that will find new treatments and improve the quality of life for those living with an ion channel epilepsy. We place a high priority on funding research that has a clear path togenetic
DASH FOR DRAVET
DASH FOR DRAVET ON TURKEY DAY. Make it a Thanksgiving Day tradition! It’s fun and It’s easy! 1. Register below then set up your personal fundraising page! 2. You will receive a race bib and custom DSF neck gaiter. 3. Ask your family and friends across the country to join you by creating their own fundraiser at www.dashfordravet.org. STOKE THERAPEUTICS LAUNCHES MONARCH STUDY A new type of medicine, STK-001, designed by Stoke Therapeutics increases healthy copies of the Nav1.1 sodium channel in pre-clinical animal and cell models. Stoke Therapeutics is now enrolling for the MONARCH study to assess if this works as a treatment for patients with Dravet syndrome. STK-001 is an anti-sense oligonucleotide (ASO). DRAVET SYNDROME AT AES 2020: A REVIEWSUPPORT GROUPS
They also are grieving and need support and understanding. The vision of Dravet Syndrome Foundation is to help researchers find ways to one day prevent or cure Dravet syndrome and related ion channel epilepsies so that future generations do not have to face the devastation ofthese diseases.
REMEMBERING CHARLOTTE Remembering Charlotte. Our community is mourning the loss of a special little girl, Charlotte Figi, who had. Dravet syndrome and bec ame the face of CBD and the cannabis legalization movement. She touched so many lives in her 13 short years, changed so many minds, and empowered her mom, Paige Figi, to move such enormous mountains that it feels HOME - DRAVET SYNDROME FOUNDATION Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in DRAVET SYNDROME IN ADULTS Dravet Syndrome in Adults Characteristics of Adult Patients Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. Previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), it affects 1:15,700 individuals, 80% of whom have a mutationin their SCN1A
NEWLY DIAGNOSED
Receiving a diagnosis of Dravet syndrome can be overwhelming and may leave a family with many unanswered questions. Much of the general information you will find may be out of date, based on studies done on people who were diagnosed clinically at an older age and who did not have the benefits of therapeutic interventions and knowledge that we have available today.FIND A DOCTOR
Dravet Syndrome Foundation, Inc. PO Box 3026 Cherry Hill, NJ 08034 P 203-392-1955 *Calls are processed through Google voice and then distributed to staff members, so it may take 24-48 hours for a DRAVET SYNDROME AT AES 2020: A REVIEW Dravet Syndrome at AES 2020: A Review. Today’s blog post is a review of some of the topics relevant to Dravet syndrome that were presented at the annual American Epilepsy Society (AES) meeting. This was my first year attending the AES meeting and also the first year the meeting was held virtually. I learned so much and was excited by theDASH FOR DRAVET
DASH FOR DRAVET ON TURKEY DAY. Make it a Thanksgiving Day tradition! It’s fun and It’s easy! 1. Register below then set up your personal fundraising page! 2. You will receive a race bib and custom DSF neck gaiter. 3. Ask your family and friends across the country to join you by creating their own fundraiser at www.dashfordravet.org. DRAVET SYNDROME FACT SHEET Page 1 of 3 DRAVET SYNDROME FACT SHEET . WHAT IS DRAVET SYNDROME? Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic GREENWICH BIOSCIENCES DSF Family Network; DSF Parent Support Groups; Patient Assistance Grants; DSF Birthday Buddies Club; Super Siblings Club; Patient-Centered Research; Bereavement GROWTH AND ENDOCRINE FUNCTION IN CHILDREN WITH DRAVET (Eschbach et al. 2017) The authors reviewed the charts of 68 patients with Dravet syndrome treated at Children's Hospital Colorado. They found that the children's height and weight fell further below average as the patient aged, and could not be attributed to gender, family history, or anti-seizure medications. Because height fell below normalbefore weight,
PAIGE - DRAVET SYNDROME FOUNDATION Dravet Syndrome Foundation, Inc. PO Box 3026 Cherry Hill, NJ 08034 P 203-392-1955 *Calls are processed through Google voice and then distributed to staff members, so it may take 24-48 hours for a2021 DSF CONFERENCE
2021 DSF Family & Professional Conference Join us on June 24-26, 2021! Research and new treatments continue to move forward in the field of Dravet syndrome. With the postponement of our 2020 event due to the pandemic, we wanted to offer a virtual learning opportunity to bridgeGENE THERAPY
Gene replacement therapy uses the casing of a virus, a viral vector, to deliver DNA that encodes a healthy copy of the mutated gene to cells. However, this approach has proven difficult in Dravet syndrome because the SCN1A gene is quite large and that amount of DNA cannot fit in commonly used delivery vectors. ADENOVIRUS VACCINES & GENE THERAPY Adenovirus Vaccines and Gene Therapy There has been some worry in the rare disease communities about the approaches that COVID-19 vaccines are using and how they may interact with future gene therapy approaches for specific disorders. Two of the current vaccines approved in the United States (Moderna and Pfizer) use RNA enclosed ina lipid droplet.
SOTICLESTAT TRIAL UPDATE Clinical Trial Update Soticlestat (TAK-938/OV935) Ovid Therapeutics recently presented updates on their clinical trials of soticlestat (TAK-935/OV935) at the American Academy of Neurology virtual meeting for their adult DEE cohorts. Soticlestat targets the cholesterol pathway by inhibiting the enzyme CH24H (cholesterol 24-hydroxylase), which produces 24HC (24-hydroxycholesterol). When2020 GRANT AWARDS
2020 Grant Awards. DSF is dedicated to funding the highest caliber research on Dravet syndrome and associated epilepsies. Our focus is on research projects that will find new treatments and improve the quality of life for those living with an ion channel epilepsy. We place a high priority on funding research that has a clear path togenetic
DASH FOR DRAVET
DASH FOR DRAVET ON TURKEY DAY. Make it a Thanksgiving Day tradition! It’s fun and It’s easy! 1. Register below then set up your personal fundraising page! 2. You will receive a race bib and custom DSF neck gaiter. 3. Ask your family and friends across the country to join you by creating their own fundraiser at www.dashfordravet.org. STOKE THERAPEUTICS LAUNCHES MONARCH STUDY A new type of medicine, STK-001, designed by Stoke Therapeutics increases healthy copies of the Nav1.1 sodium channel in pre-clinical animal and cell models. Stoke Therapeutics is now enrolling for the MONARCH study to assess if this works as a treatment for patients with Dravet syndrome. STK-001 is an anti-sense oligonucleotide (ASO). DRAVET SYNDROME AT AES 2020: A REVIEWSUPPORT GROUPS
They also are grieving and need support and understanding. The vision of Dravet Syndrome Foundation is to help researchers find ways to one day prevent or cure Dravet syndrome and related ion channel epilepsies so that future generations do not have to face the devastation ofthese diseases.
REMEMBERING CHARLOTTE Remembering Charlotte. Our community is mourning the loss of a special little girl, Charlotte Figi, who had. Dravet syndrome and bec ame the face of CBD and the cannabis legalization movement. She touched so many lives in her 13 short years, changed so many minds, and empowered her mom, Paige Figi, to move such enormous mountains that it feels2021 DSF CONFERENCE
2021 DSF Family & Professional Conference Join us on June 24-26, 2021! Research and new treatments continue to move forward in the field of Dravet syndrome. With the postponement of our 2020 event due to the pandemic, we wanted to offer a virtual learning opportunity to bridgeGENE THERAPY
Gene replacement therapy uses the casing of a virus, a viral vector, to deliver DNA that encodes a healthy copy of the mutated gene to cells. However, this approach has proven difficult in Dravet syndrome because the SCN1A gene is quite large and that amount of DNA cannot fit in commonly used delivery vectors. ADENOVIRUS VACCINES & GENE THERAPY Adenovirus Vaccines and Gene Therapy There has been some worry in the rare disease communities about the approaches that COVID-19 vaccines are using and how they may interact with future gene therapy approaches for specific disorders. Two of the current vaccines approved in the United States (Moderna and Pfizer) use RNA enclosed ina lipid droplet.
SOTICLESTAT TRIAL UPDATE Clinical Trial Update Soticlestat (TAK-938/OV935) Ovid Therapeutics recently presented updates on their clinical trials of soticlestat (TAK-935/OV935) at the American Academy of Neurology virtual meeting for their adult DEE cohorts. Soticlestat targets the cholesterol pathway by inhibiting the enzyme CH24H (cholesterol 24-hydroxylase), which produces 24HC (24-hydroxycholesterol). When2020 GRANT AWARDS
2020 Grant Awards. DSF is dedicated to funding the highest caliber research on Dravet syndrome and associated epilepsies. Our focus is on research projects that will find new treatments and improve the quality of life for those living with an ion channel epilepsy. We place a high priority on funding research that has a clear path togenetic
DASH FOR DRAVET
DASH FOR DRAVET ON TURKEY DAY. Make it a Thanksgiving Day tradition! It’s fun and It’s easy! 1. Register below then set up your personal fundraising page! 2. You will receive a race bib and custom DSF neck gaiter. 3. Ask your family and friends across the country to join you by creating their own fundraiser at www.dashfordravet.org. STOKE THERAPEUTICS LAUNCHES MONARCH STUDY A new type of medicine, STK-001, designed by Stoke Therapeutics increases healthy copies of the Nav1.1 sodium channel in pre-clinical animal and cell models. Stoke Therapeutics is now enrolling for the MONARCH study to assess if this works as a treatment for patients with Dravet syndrome. STK-001 is an anti-sense oligonucleotide (ASO). DRAVET SYNDROME AT AES 2020: A REVIEWSUPPORT GROUPS
They also are grieving and need support and understanding. The vision of Dravet Syndrome Foundation is to help researchers find ways to one day prevent or cure Dravet syndrome and related ion channel epilepsies so that future generations do not have to face the devastation ofthese diseases.
REMEMBERING CHARLOTTE Remembering Charlotte. Our community is mourning the loss of a special little girl, Charlotte Figi, who had. Dravet syndrome and bec ame the face of CBD and the cannabis legalization movement. She touched so many lives in her 13 short years, changed so many minds, and empowered her mom, Paige Figi, to move such enormous mountains that it feels HOME - DRAVET SYNDROME FOUNDATION Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in DRAVET SYNDROME IN ADULTS Dravet Syndrome in Adults Characteristics of Adult Patients Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. Previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), it affects 1:15,700 individuals, 80% of whom have a mutationin their SCN1A
NEWLY DIAGNOSED
Receiving a diagnosis of Dravet syndrome can be overwhelming and may leave a family with many unanswered questions. Much of the general information you will find may be out of date, based on studies done on people who were diagnosed clinically at an older age and who did not have the benefits of therapeutic interventions and knowledge that we have available today.FIND A DOCTOR
Dravet Syndrome Foundation, Inc. PO Box 3026 Cherry Hill, NJ 08034 P 203-392-1955 *Calls are processed through Google voice and then distributed to staff members, so it may take 24-48 hours for a DRAVET SYNDROME AT AES 2020: A REVIEW Dravet Syndrome at AES 2020: A Review. Today’s blog post is a review of some of the topics relevant to Dravet syndrome that were presented at the annual American Epilepsy Society (AES) meeting. This was my first year attending the AES meeting and also the first year the meeting was held virtually. I learned so much and was excited by theDASH FOR DRAVET
DASH FOR DRAVET ON TURKEY DAY. Make it a Thanksgiving Day tradition! It’s fun and It’s easy! 1. Register below then set up your personal fundraising page! 2. You will receive a race bib and custom DSF neck gaiter. 3. Ask your family and friends across the country to join you by creating their own fundraiser at www.dashfordravet.org. DRAVET SYNDROME FACT SHEET Page 1 of 3 DRAVET SYNDROME FACT SHEET . WHAT IS DRAVET SYNDROME? Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic GREENWICH BIOSCIENCES DSF Family Network; DSF Parent Support Groups; Patient Assistance Grants; DSF Birthday Buddies Club; Super Siblings Club; Patient-Centered Research; Bereavement GROWTH AND ENDOCRINE FUNCTION IN CHILDREN WITH DRAVET (Eschbach et al. 2017) The authors reviewed the charts of 68 patients with Dravet syndrome treated at Children's Hospital Colorado. They found that the children's height and weight fell further below average as the patient aged, and could not be attributed to gender, family history, or anti-seizure medications. Because height fell below normalbefore weight,
PAIGE - DRAVET SYNDROME FOUNDATION Dravet Syndrome Foundation, Inc. PO Box 3026 Cherry Hill, NJ 08034 P 203-392-1955 *Calls are processed through Google voice and then distributed to staff members, so it may take 24-48 hours for aSkip to content
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2019-03-07T13:28:17-05:00 __What is Dravet Syndrome? Click here to learn more about Dravet syndrome and childhood EpilepsyLearn More
__Dravet Syndrome Stories Meet our superheroes who fight every day against Dravet!Learn More
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Find out why Dravet Syndrome Research is our hope for a cureLearn More
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Find out how to help us in the fight to cure Dravet syndromeLearn More
Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions. By offering research grants for syndrome-specific research with a novel approach, DSF can move researchers and the medical community forward to find better treatments and a cure while assisting afflicted individuals and their families.__donate
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PARTICIPATE IN UPCOMING FUNDRAISING AND AWARENESS EVENTS!CHICAGO MARATHON
OCTOBER 13 @ 7:30 AM - 4:00 PM STEPS TOWARD A CURE: ATLANTA OCTOBER 26 @ 9:00 AM - 12:00 PM DOUBLE DOWN FOR DRAVET: PHILADELPHIA NOVEMBER 2 @ 6:30 PM - 11:00 PM UNC REX HEALTHCARE HALF MARATHON NOVEMBER 3 @ 7:00 AM - 5:00 PM DASH FOR DRAVET ON TURKEY DAY – VIRTUAL EVENTNOVEMBER 28
BMW DALLAS HALF MARATHON DECEMBER 15 @ 8:30 AM - 5:00 PM DOUBLE DOWN FOR DRAVET: H-TOWN FEBRUARY 22, 2020 @ 6:30 PM - 11:00 PM DRAVET SYNDROME FOUNDATION, INC.PO Box 3026
Cherry Hill, NJ 08034P 203-392-1955
*Calls are processed through Google voice and then distributed to staff members, so it may take 24-48 hours for a response. For a quicker response, please email info@dravetfoundation.org. MARY ANNE MESKIS, EXECUTIVE DIRECTOR maryanne@dravetfoundation.orgGENERAL INQUIRIES
info@dravetfoundation.org Please Note: DSF is unable to provide medical advice. Please direct any medical related questions to your physician.EMAIL SIGN UP
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