Wave of Hope SSADH | Lyme Disease
SSADH
Amber and Haley Le Vine are two young women who are diagnosed with SSADH (Succinic Semialdehyde Dehydrogenase Deficiency). It took seven years and five major hospitals and a final visit to Johns Hopkins in Baltimore, MD in 1996 to identify that they both Amber and Haley had this rare disorder. At that time, they were identified as the fifth and sixth patients in the United States. Since then a total of almost 400 SSADH people worldwide have been recognized.
They are two very lively, bright, energetic young women, now 27 and 29, who struggle with speech, gross motor and serious memory problems. Every day of their lives they have to deal with these very real limitations. As their family, we desperately want to find answers to enable to have lives closer to those like the rest of us enjoy and take for granted. It has been through the research and medical efforts of Dr. Geoff Chimsky, Dr. Phillip Pearl, Dr. Michael Gibson, and others that we have pursued answers and hope since then. The PND (Pediatric Neurotransmitter Disease) Assocation has been vital in assisting these efforts through conferences and with grants in spearheading the efforts to combat this disease. Now, we have our own organization, the SSADH Association, which makes it even easier to channel our efforts and funds, and to identify and bring SSADH families together. The support of these organizations has enabled Amber and Haley to made some strides against the effects of SSADH.
In recent years Amber and Haley underwent extensive testing at the National Institute of Health in Washington, D.C. as part of a grant to seek out medical ways to combat this disease. There isn't a big national voice for this small group of afflicted SSADH patients - many people have never even heard of this disease.
The Le Vine family has started the Wave of Hope SSADH foundation to raise funds to support this cause. Our goal is to get them the national attention and help they so deserve. Amber and Haley, and our family would appreciate anything you can do to join us in this cause. Through your contributions , we CAN raise money to support and maintain these efforts to give hope for a better life to Amber and Haley and to all the other children and adults that suffer from SSADH. WE CAN reach those goals and make a difference. Proceeds go to the SSADH Association. Please consider donating to the Wave of Hope SSADH foundation to support us in making a difference for all those impacted by SSADH.
You can learn more about SSADH and the Annual Benefit on the Wave of Hope SSADH website by clicking here: Wave of Hope SSADH
LYME DISEASE
On top of coping with her SSADH symptoms, Amber has unfortunately been diagnosed with Lyme disease as well. This has painfully and dramatically disrupted Amber's quality of life over the past year and half. She is unable to function on a daily basis in ways that she once could. To date she has undergone 12 IVIG treatments amongst many other methods for attacking this horrific disease.
This year a portion of the funds raised during the benefit and through GoFund Me will be donated to Lyme disease research.
Thank you for your continued support and commitment to raising awareness and funds for SSADH.
All our love,
Jesse, Karen, Jacqui, Ali, Amber, and Haley
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Amber and Haley Le Vine are two young women who are diagnosed with SSADH (Succinic Semialdehyde Dehydrogenase Deficiency). It took seven years and five major hospitals and a final visit to Johns Hopkins in Baltimore, MD in 1996 to identify that they both Amber and Haley had this rare disorder. At that time, they were identified as the fifth and sixth patients in the United States. Since then a total of almost 400 SSADH people worldwide have been recognized.
They are two very lively, bright, energetic young women, now 27 and 29, who struggle with speech, gross motor and serious memory problems. Every day of their lives they have to deal with these very real limitations. As their family, we desperately want to find answers to enable to have lives closer to those like the rest of us enjoy and take for granted. It has been through the research and medical efforts of Dr. Geoff Chimsky, Dr. Phillip Pearl, Dr. Michael Gibson, and others that we have pursued answers and hope since then. The PND (Pediatric Neurotransmitter Disease) Assocation has been vital in assisting these efforts through conferences and with grants in spearheading the efforts to combat this disease. Now, we have our own organization, the SSADH Association, which makes it even easier to channel our efforts and funds, and to identify and bring SSADH families together. The support of these organizations has enabled Amber and Haley to made some strides against the effects of SSADH.
In recent years Amber and Haley underwent extensive testing at the National Institute of Health in Washington, D.C. as part of a grant to seek out medical ways to combat this disease. There isn't a big national voice for this small group of afflicted SSADH patients - many people have never even heard of this disease.
The Le Vine family has started the Wave of Hope SSADH foundation to raise funds to support this cause. Our goal is to get them the national attention and help they so deserve. Amber and Haley, and our family would appreciate anything you can do to join us in this cause. Through your contributions , we CAN raise money to support and maintain these efforts to give hope for a better life to Amber and Haley and to all the other children and adults that suffer from SSADH. WE CAN reach those goals and make a difference. Proceeds go to the SSADH Association. Please consider donating to the Wave of Hope SSADH foundation to support us in making a difference for all those impacted by SSADH.
You can learn more about SSADH and the Annual Benefit on the Wave of Hope SSADH website by clicking here: Wave of Hope SSADH
LYME DISEASE
On top of coping with her SSADH symptoms, Amber has unfortunately been diagnosed with Lyme disease as well. This has painfully and dramatically disrupted Amber's quality of life over the past year and half. She is unable to function on a daily basis in ways that she once could. To date she has undergone 12 IVIG treatments amongst many other methods for attacking this horrific disease.
This year a portion of the funds raised during the benefit and through GoFund Me will be donated to Lyme disease research.
Thank you for your continued support and commitment to raising awareness and funds for SSADH.
All our love,
Jesse, Karen, Jacqui, Ali, Amber, and Haley
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