Board of Directors & Committees

Jan Hempstead, RN

Interim Vice Chair, Patient Care Coordination Chair

I began as a volunteer RN for the Mastocytosis Society, helping on our TMS Facebook support page and answering patient, caregiver and physician calls and messages. I had left my position as a nurse manager after being too ill to work in the hospital. Volunteering was a way for me to give back and use my nursing skills.

After about two years, I became the TMS Patient Care Coordinator Chair, helping to write training material for other RNs, as well as coordinating patient care across the country. Most recently, I joined the TMS Board of Directors in my role as Patient Care Coordinator Chair and look forward to helping the TMS mission of continued research, education of patients, caregivers and medical professionals and advocacy.

My personal mast cell journey began in 2012 when I was attending an Ehlers-Danlos conference. I had been diagnosed three decades prior with Ehlers-Danlos Syndrome (EDS), Hypermobility type. A physician was giving a presentation at the EDS conference about Mast Cell Activation Syndrome (MCAS) and that patients with EDS often also had MCAS. When he described the symptoms, I knew that’s what I had been experiencing for years. I saw Dr. Mariana Castells and was diagnosed with MCAS.

I always had an elevated tryptase and multiple anaphylactic episodes. Dr. Castells referred me to Dr. Joshua Milner at the NIH and I ultimately was diagnosed with Alpha Tryptasemia. My daughter, Carrie and son, Christopher both have EDS, MCAS and Dysautonomia too, as well as several other family members. I have a very supportive husband, Brian, who has learned more about mast cells than most physicians.

I am grateful for the support and community that the Mastocytosis Society provided to me when I first diagnosed and I encourage all who are diagnosed and in the process to take advantage of this support.

Ariella Cohen

Courtney Rabb

Fundraising Chair

Kris Greer

Marla Barkoff, MD

Jodylynn Bachiman, MS

Gail Barbera, B.A.

Secretary, Education Chair, Volunteer Chair, Website Committee, International Mastocytosis & Mast Cell Diseases Committee,

I grew up in Massachusetts, attended Lesley College and Regis College while working at Boston Museum of Science in their Education Department. I began my professional career here as a teacher, married Stephen in 1981 and had two wonderful children, Shannon and Tony.  We moved to Scotland for a few years for my husband’s job, then when we returned I created Student Portfolio books for the Deafblind Project at Perkins School describing students’ abilities and needs for the many specialists entering their lives to reference.  Our family became involved with Hyde School in Bath, Maine and participated in their character-intensive support groups, and I was invited to continue on as a Facilitator for their Northeast Area Family Support Groups for several years.  During that time I owned a small in-home business, and worked 16 years in a busy elementary school office (retired September 2016).  I have served on the Board for our local Lakeshore Association as Communications Director advocating at several governmental levels regarding environmental issues concerning our beautiful Fort Meadow Lake community, and maintaining their Website and Facebook communications.  Our children are grown now and live (too far away!) in Louisiana and Colorado.

My Mastocytosis journey is similar to many others… In 2001, at age 45, I became covered in spots and went on to having frequent unexplained episodes of anaphylaxis. This was a very scary time for me and my family. Finally in 2004, after many doctors and hospitals, I was diagnosed with SM. Looking back through my life I can now see other much earlier health struggles that could have been related to Mastocytosis.  Thank goodness I found Rita Barlow at TMS online and would have been lost without her help and reassurance. I still deal with bouts of flushing, rashes/hives, bone pain, extreme fatigue and brain fog, but thankfully, with good medicines, haven’t had a full anaphylaxis attack since 2012.

There are so many wonderful people in TMS that have touched my heart and inspired me with their stories. I’ve enjoyed raising awareness with Mastocytosis Walks/Fundraisers, volunteered at TMS Boston Conference, helped exhibit for TMS at the AAAAI Medical Conference, participated on Masto Patient Panels and Focus Groups for local medical research companies, met with State Representatives at the Boston State House for Rare Disease Day, and now serve as the TMS representative on the International Mastocytosis & Mast Cell Diseases Committee. I’m infinitely grateful to have TMS for information and support, I don’t know what I would do without them or my very supportive family. I am very excited to be able to give back a bit to TMS and look forward to working for our TMS members. I hope to help TMS folks in every way I can.

Jodylynn Bachiman, MS

Jennifer Lockhart

Advocacy Chair

Judith Emmel

Alyssa Silkwood

Gail Barbera, B.A.

Secretary, Education Chair, Volunteer Chair, Website Committee, International Mastocytosis & Mast Cell Diseases Committee,

I grew up in Massachusetts, attended Lesley College and Regis College while working at Boston Museum of Science in their Education Department. I began my professional career here as a teacher, married Stephen in 1981 and had two wonderful children, Shannon and Tony.  We moved to Scotland for a few years for my husband’s job, then when we returned I created Student Portfolio books for the Deafblind Project at Perkins School describing students’ abilities and needs for the many specialists entering their lives to reference.  Our family became involved with Hyde School in Bath, Maine and participated in their character-intensive support groups, and I was invited to continue on as a Facilitator for their Northeast Area Family Support Groups for several years.  During that time I owned a small in-home business, and worked 16 years in a busy elementary school office (retired September 2016).  I have served on the Board for our local Lakeshore Association as Communications Director advocating at several governmental levels regarding environmental issues concerning our beautiful Fort Meadow Lake community, and maintaining their Website and Facebook communications.  Our children are grown now and live (too far away!) in Louisiana and Colorado.

My Mastocytosis journey is similar to many others… In 2001, at age 45, I became covered in spots and went on to having frequent unexplained episodes of anaphylaxis. This was a very scary time for me and my family. Finally in 2004, after many doctors and hospitals, I was diagnosed with SM. Looking back through my life I can now see other much earlier health struggles that could have been related to Mastocytosis.  Thank goodness I found Rita Barlow at TMS online and would have been lost without her help and reassurance. I still deal with bouts of flushing, rashes/hives, bone pain, extreme fatigue and brain fog, but thankfully, with good medicines, haven’t had a full anaphylaxis attack since 2012.

There are so many wonderful people in TMS that have touched my heart and inspired me with their stories. I’ve enjoyed raising awareness with Mastocytosis Walks/Fundraisers, volunteered at TMS Boston Conference, helped exhibit for TMS at the AAAAI Medical Conference, participated on Masto Patient Panels and Focus Groups for local medical research companies, met with State Representatives at the Boston State House for Rare Disease Day, and now serve as the TMS representative on the International Mastocytosis & Mast Cell Diseases Committee. I’m infinitely grateful to have TMS for information and support, I don’t know what I would do without them or my very supportive family. I am very excited to be able to give back a bit to TMS and look forward to working for our TMS members. I hope to help TMS folks in every way I can.

Chantelle Cornwell

Shipping & Materials Manager

Kathy Tomasic

Medical Conferene Project Manager

Valerie M. Slee, RN, B.S.N.

Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison, Patient Referral Coordinator,
Drug Shortage Co-Chair

I first served as the TMS Vice Chair from 2002-2009, then assumed the Chair position when my dear friend Rita Barlow stepped down due to health issues. I have also served as Liaison to the Medical Advisory Board, Research Committee, Pediatric Committee, and to the MPN and Smoldering Mastocytosis Committee. I Co-Chair the Drug Shortage Committee with Emily Menard. I obtained a Bachelor of Science in Nursing Degree from Syracuse University, summa cum laude, in 1975, and have 40 years of experience as a pediatric nurse in major hospitals including UCONN Health Center/John Dempsey Hospital Pediatric ICU and NICU, Upstate Medical Center in Syracuse, NY in Pediatrics and Pediatric ICU, St. Peter’s Hospital Albany, NY, Children’s Hospital of Philadelphia, and UMASS. My experience included many years of pediatric intensive care and pediatric hematology oncology. I also was an instructor in Pediatrics, Pediatric ICU, Fundamentals of Nursing and Maternal Child Nursing at Maria College in Albany, NY. Most recently, I was a pediatric triage nurse for Night Nurse of Framingham, MA. I am a sitting member of the Mast Cell Disorders Committee of the American Academy of Allergy, Asthma and Immunology. I collaborate with mast cell disorder patient organizations all over the world, their members and physicians. I work extensively with the TMS Research Committee, and am in touch with patients and physicians every day, as my disease allows.

I am fortunate to be happily married to Andrew Slee (41 years and counting!), have three wonderful adult children, and three amazing grandsons! I have had MCAS for many years, probably since age 6, but I was not diagnosed with a mast cell disorder until age 34. Currently, I am 63 years old. My own health has deteriorated in the last few years, and has made it necessary for me to go on disability. While I very much miss my pediatric patients, I enjoy working with the mast cell community! TMS is a wonderful organization, full of giving and supportive people who care so much for each other and for each of the members. I am proud to be Chair of these committed volunteers on behalf of our members worldwide!

Jan Hempstead, RN

Interim Vice Chair, Patient Care Coordination Chair

I began as a volunteer RN for the Mastocytosis Society, helping on our TMS Facebook support page and answering patient, caregiver and physician calls and messages. I had left my position as a nurse manager after being too ill to work in the hospital. Volunteering was a way for me to give back and use my nursing skills.

After about two years, I became the TMS Patient Care Coordinator Chair, helping to write training material for other RNs, as well as coordinating patient care across the country. Most recently, I joined the TMS Board of Directors in my role as Patient Care Coordinator Chair and look forward to helping the TMS mission of continued research, education of patients, caregivers and medical professionals and advocacy.

My personal mast cell journey began in 2012 when I was attending an Ehlers-Danlos conference. I had been diagnosed three decades prior with Ehlers-Danlos Syndrome (EDS), Hypermobility type. A physician was giving a presentation at the EDS conference about Mast Cell Activation Syndrome (MCAS) and that patients with EDS often also had MCAS. When he described the symptoms, I knew that’s what I had been experiencing for years. I saw Dr. Mariana Castells and was diagnosed with MCAS.

I always had an elevated tryptase and multiple anaphylactic episodes. Dr. Castells referred me to Dr. Joshua Milner at the NIH and I ultimately was diagnosed with Alpha Tryptasemia. My daughter, Carrie and son, Christopher both have EDS, MCAS and Dysautonomia too, as well as several other family members. I have a very supportive husband, Brian, who has learned more about mast cells than most physicians.

I am grateful for the support and community that the Mastocytosis Society provided to me when I first diagnosed and I encourage all who are diagnosed and in the process to take advantage of this support.

Sara Gemmill, RN, BSN

Patient Care Coordination

Deb Watson

Physician Database Assistant

Pediatrics Chair

Pediatrics Chair

Kolleen Barlow

Wendy Ringer

Susanne Bragg

Jennifer Mohr

Stacy Sheldon

Valerie M. Slee, RN, B.S.N.

Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison, Patient Referral Coordinator,
Drug Shortage Co-Chair

I first served as the TMS Vice Chair from 2002-2009, then assumed the Chair position when my dear friend Rita Barlow stepped down due to health issues. I have also served as Liaison to the Medical Advisory Board, Research Committee, Pediatric Committee, and to the MPN and Smoldering Mastocytosis Committee. I Co-Chair the Drug Shortage Committee with Emily Menard. I obtained a Bachelor of Science in Nursing Degree from Syracuse University, summa cum laude, in 1975, and have 40 years of experience as a pediatric nurse in major hospitals including UCONN Health Center/John Dempsey Hospital Pediatric ICU and NICU, Upstate Medical Center in Syracuse, NY in Pediatrics and Pediatric ICU, St. Peter’s Hospital Albany, NY, Children’s Hospital of Philadelphia, and UMASS. My experience included many years of pediatric intensive care and pediatric hematology oncology. I also was an instructor in Pediatrics, Pediatric ICU, Fundamentals of Nursing and Maternal Child Nursing at Maria College in Albany, NY. Most recently, I was a pediatric triage nurse for Night Nurse of Framingham, MA. I am a sitting member of the Mast Cell Disorders Committee of the American Academy of Allergy, Asthma and Immunology. I collaborate with mast cell disorder patient organizations all over the world, their members and physicians. I work extensively with the TMS Research Committee, and am in touch with patients and physicians every day, as my disease allows.

I am fortunate to be happily married to Andrew Slee (41 years and counting!), have three wonderful adult children, and three amazing grandsons! I have had MCAS for many years, probably since age 6, but I was not diagnosed with a mast cell disorder until age 34. Currently, I am 63 years old. My own health has deteriorated in the last few years, and has made it necessary for me to go on disability. While I very much miss my pediatric patients, I enjoy working with the mast cell community! TMS is a wonderful organization, full of giving and supportive people who care so much for each other and for each of the members. I am proud to be Chair of these committed volunteers on behalf of our members worldwide!

Michele Q. Kress

Smoldering Systemic Mastocytosis (SSM)

Jan Hempstead, RN

Interim Vice Chair, Patient Care Coordination Chair

I began as a volunteer RN for the Mastocytosis Society, helping on our TMS Facebook support page and answering patient, caregiver and physician calls and messages. I had left my position as a nurse manager after being too ill to work in the hospital. Volunteering was a way for me to give back and use my nursing skills.

After about two years, I became the TMS Patient Care Coordinator Chair, helping to write training material for other RNs, as well as coordinating patient care across the country. Most recently, I joined the TMS Board of Directors in my role as Patient Care Coordinator Chair and look forward to helping the TMS mission of continued research, education of patients, caregivers and medical professionals and advocacy.

My personal mast cell journey began in 2012 when I was attending an Ehlers-Danlos conference. I had been diagnosed three decades prior with Ehlers-Danlos Syndrome (EDS), Hypermobility type. A physician was giving a presentation at the EDS conference about Mast Cell Activation Syndrome (MCAS) and that patients with EDS often also had MCAS. When he described the symptoms, I knew that’s what I had been experiencing for years. I saw Dr. Mariana Castells and was diagnosed with MCAS.

I always had an elevated tryptase and multiple anaphylactic episodes. Dr. Castells referred me to Dr. Joshua Milner at the NIH and I ultimately was diagnosed with Alpha Tryptasemia. My daughter, Carrie and son, Christopher both have EDS, MCAS and Dysautonomia too, as well as several other family members. I have a very supportive husband, Brian, who has learned more about mast cells than most physicians.

I am grateful for the support and community that the Mastocytosis Society provided to me when I first diagnosed and I encourage all who are diagnosed and in the process to take advantage of this support.

Gail Barbera, B.A.

Secretary, Education Chair, Volunteer Chair, Website Committee, International Mastocytosis & Mast Cell Diseases Committee,

I grew up in Massachusetts, attended Lesley College and Regis College while working at Boston Museum of Science in their Education Department. I began my professional career here as a teacher, married Stephen in 1981 and had two wonderful children, Shannon and Tony.  We moved to Scotland for a few years for my husband’s job, then when we returned I created Student Portfolio books for the Deafblind Project at Perkins School describing students’ abilities and needs for the many specialists entering their lives to reference.  Our family became involved with Hyde School in Bath, Maine and participated in their character-intensive support groups, and I was invited to continue on as a Facilitator for their Northeast Area Family Support Groups for several years.  During that time I owned a small in-home business, and worked 16 years in a busy elementary school office (retired September 2016).  I have served on the Board for our local Lakeshore Association as Communications Director advocating at several governmental levels regarding environmental issues concerning our beautiful Fort Meadow Lake community, and maintaining their Website and Facebook communications.  Our children are grown now and live (too far away!) in Louisiana and Colorado.

My Mastocytosis journey is similar to many others… In 2001, at age 45, I became covered in spots and went on to having frequent unexplained episodes of anaphylaxis. This was a very scary time for me and my family. Finally in 2004, after many doctors and hospitals, I was diagnosed with SM. Looking back through my life I can now see other much earlier health struggles that could have been related to Mastocytosis.  Thank goodness I found Rita Barlow at TMS online and would have been lost without her help and reassurance. I still deal with bouts of flushing, rashes/hives, bone pain, extreme fatigue and brain fog, but thankfully, with good medicines, haven’t had a full anaphylaxis attack since 2012.

There are so many wonderful people in TMS that have touched my heart and inspired me with their stories. I’ve enjoyed raising awareness with Mastocytosis Walks/Fundraisers, volunteered at TMS Boston Conference, helped exhibit for TMS at the AAAAI Medical Conference, participated on Masto Patient Panels and Focus Groups for local medical research companies, met with State Representatives at the Boston State House for Rare Disease Day, and now serve as the TMS representative on the International Mastocytosis & Mast Cell Diseases Committee. I’m infinitely grateful to have TMS for information and support, I don’t know what I would do without them or my very supportive family. I am very excited to be able to give back a bit to TMS and look forward to working for our TMS members. I hope to help TMS folks in every way I can.

Emily Bolden

Interim Support Group Coordinator

Gail Barbera, B.A.

Secretary, Education Chair, Volunteer Chair, Website Committee, International Mastocytosis & Mast Cell Diseases Committee,

I grew up in Massachusetts, attended Lesley College and Regis College while working at Boston Museum of Science in their Education Department. I began my professional career here as a teacher, married Stephen in 1981 and had two wonderful children, Shannon and Tony.  We moved to Scotland for a few years for my husband’s job, then when we returned I created Student Portfolio books for the Deafblind Project at Perkins School describing students’ abilities and needs for the many specialists entering their lives to reference.  Our family became involved with Hyde School in Bath, Maine and participated in their character-intensive support groups, and I was invited to continue on as a Facilitator for their Northeast Area Family Support Groups for several years.  During that time I owned a small in-home business, and worked 16 years in a busy elementary school office (retired September 2016).  I have served on the Board for our local Lakeshore Association as Communications Director advocating at several governmental levels regarding environmental issues concerning our beautiful Fort Meadow Lake community, and maintaining their Website and Facebook communications.  Our children are grown now and live (too far away!) in Louisiana and Colorado.

My Mastocytosis journey is similar to many others… In 2001, at age 45, I became covered in spots and went on to having frequent unexplained episodes of anaphylaxis. This was a very scary time for me and my family. Finally in 2004, after many doctors and hospitals, I was diagnosed with SM. Looking back through my life I can now see other much earlier health struggles that could have been related to Mastocytosis.  Thank goodness I found Rita Barlow at TMS online and would have been lost without her help and reassurance. I still deal with bouts of flushing, rashes/hives, bone pain, extreme fatigue and brain fog, but thankfully, with good medicines, haven’t had a full anaphylaxis attack since 2012.

There are so many wonderful people in TMS that have touched my heart and inspired me with their stories. I’ve enjoyed raising awareness with Mastocytosis Walks/Fundraisers, volunteered at TMS Boston Conference, helped exhibit for TMS at the AAAAI Medical Conference, participated on Masto Patient Panels and Focus Groups for local medical research companies, met with State Representatives at the Boston State House for Rare Disease Day, and now serve as the TMS representative on the International Mastocytosis & Mast Cell Diseases Committee. I’m infinitely grateful to have TMS for information and support, I don’t know what I would do without them or my very supportive family. I am very excited to be able to give back a bit to TMS and look forward to working for our TMS members. I hope to help TMS folks in every way I can.

Kelli Foster

Jennifer Lockhart

Advocacy Chair

Nicole Rogne

Fundraising

Courtney Rabb

Fundraising Chair

Valerie M. Slee, RN, B.S.N.

Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison, Patient Referral Coordinator,
Drug Shortage Co-Chair

I first served as the TMS Vice Chair from 2002-2009, then assumed the Chair position when my dear friend Rita Barlow stepped down due to health issues. I have also served as Liaison to the Medical Advisory Board, Research Committee, Pediatric Committee, and to the MPN and Smoldering Mastocytosis Committee. I Co-Chair the Drug Shortage Committee with Emily Menard. I obtained a Bachelor of Science in Nursing Degree from Syracuse University, summa cum laude, in 1975, and have 40 years of experience as a pediatric nurse in major hospitals including UCONN Health Center/John Dempsey Hospital Pediatric ICU and NICU, Upstate Medical Center in Syracuse, NY in Pediatrics and Pediatric ICU, St. Peter’s Hospital Albany, NY, Children’s Hospital of Philadelphia, and UMASS. My experience included many years of pediatric intensive care and pediatric hematology oncology. I also was an instructor in Pediatrics, Pediatric ICU, Fundamentals of Nursing and Maternal Child Nursing at Maria College in Albany, NY. Most recently, I was a pediatric triage nurse for Night Nurse of Framingham, MA. I am a sitting member of the Mast Cell Disorders Committee of the American Academy of Allergy, Asthma and Immunology. I collaborate with mast cell disorder patient organizations all over the world, their members and physicians. I work extensively with the TMS Research Committee, and am in touch with patients and physicians every day, as my disease allows.

I am fortunate to be happily married to Andrew Slee (41 years and counting!), have three wonderful adult children, and three amazing grandsons! I have had MCAS for many years, probably since age 6, but I was not diagnosed with a mast cell disorder until age 34. Currently, I am 63 years old. My own health has deteriorated in the last few years, and has made it necessary for me to go on disability. While I very much miss my pediatric patients, I enjoy working with the mast cell community! TMS is a wonderful organization, full of giving and supportive people who care so much for each other and for each of the members. I am proud to be Chair of these committed volunteers on behalf of our members worldwide!

Celeste Finnerty, PhD

Andrew M. Slee, PhD

Pamela Farthing, RN, MSc

Susan Jennings, PhD

Research Committee Chair, Chronicles Committee, Website Contribution Committee

Dr. Jennings received her bachelor’s degree in Chemistry and Biochemistry from the University of California, San Diego and her PhD in Cancer Biology from Stanford University School of Medicine. Her earlier research interests focused on harnessing the power of the human immune system to fight disease and improve patient health. She has worked in the biotechnology industry and has spent many years volunteering, including for the Association for Women in Science, Girl Scouts of America, and her local school district.

Since 2009, Dr. Jennings has served on The Mastocytosis Society, Inc. (TMS) Research Committee, first as Co-Chair with Dr. Nancy Russell for seven years, and as Chair since the beginning of 2017. She serves as an adviser to our TMS Board of Directors, attends medical conferences as a representative of TMS, in both a scientific capacity and as a resource at TMS booths, and works closely with other Research Committee members, our TMS Board of Directors and our TMS Medical Advisory Board. Also as part of the Research Committee, Dr. Jennings works with other organizations, specialty physicians, government entities, and industry on joint TMS projects and in an advisory role as a representative of TMS. She serves, with Valerie Slee, RN, BSN, Chair, TMS Board of Directors, on the Mast Cell Disorders Committee of the American Academy of Allergy, Asthma and Immunology (AAAAI), of which TMS is a Lay Organization. Her activities with this committee resulted in the first ICD-10-CM code set for mast cell activation syndrome (MCAS) variants and updated codes for mastocytosis. Dr. Jennings has co-authored mast cell disease research and review articles and research presentations on behalf of TMS, including the publication of two research articles based on findings from our 2010 TMS Mast Cell Disorder Patient Survey, in collaboration with mast cell disorder specialists and others from TMS. Her latest research involves a 2018 MCAS Patient Survey, findings of which were presented at the National Institutes of Health in September 2018.

Dr. Jennings feels very strongly that, as a rare disease organization, bringing together groups within and affecting the mast cell disorder community, to explore and address the challenges these parties face, is an important way that TMS can help to improve the lives of patients, their families, and caregivers. She is highly dedicated to the successful formation of the American Initiative in Mast Cell Diseases, a future mast cell disease network within the Americas actively partners with others to develop TMS educational material for health care professionals and patients, and works to help TMS provide much-needed funding for mast cell disease research.

Angela Bowman PhD

Dr Catherine Weiler, MD

Barbara Ruby, MS

Advocacy Liaison

Gail Barbera, B.A.

Secretary, Education Chair, Volunteer Chair, Website Committee, International Mastocytosis & Mast Cell Diseases Committee,

I grew up in Massachusetts, attended Lesley College and Regis College while working at Boston Museum of Science in their Education Department. I began my professional career here as a teacher, married Stephen in 1981 and had two wonderful children, Shannon and Tony.  We moved to Scotland for a few years for my husband’s job, then when we returned I created Student Portfolio books for the Deafblind Project at Perkins School describing students’ abilities and needs for the many specialists entering their lives to reference.  Our family became involved with Hyde School in Bath, Maine and participated in their character-intensive support groups, and I was invited to continue on as a Facilitator for their Northeast Area Family Support Groups for several years.  During that time I owned a small in-home business, and worked 16 years in a busy elementary school office (retired September 2016).  I have served on the Board for our local Lakeshore Association as Communications Director advocating at several governmental levels regarding environmental issues concerning our beautiful Fort Meadow Lake community, and maintaining their Website and Facebook communications.  Our children are grown now and live (too far away!) in Louisiana and Colorado.

My Mastocytosis journey is similar to many others… In 2001, at age 45, I became covered in spots and went on to having frequent unexplained episodes of anaphylaxis. This was a very scary time for me and my family. Finally in 2004, after many doctors and hospitals, I was diagnosed with SM. Looking back through my life I can now see other much earlier health struggles that could have been related to Mastocytosis.  Thank goodness I found Rita Barlow at TMS online and would have been lost without her help and reassurance. I still deal with bouts of flushing, rashes/hives, bone pain, extreme fatigue and brain fog, but thankfully, with good medicines, haven’t had a full anaphylaxis attack since 2012.

There are so many wonderful people in TMS that have touched my heart and inspired me with their stories. I’ve enjoyed raising awareness with Mastocytosis Walks/Fundraisers, volunteered at TMS Boston Conference, helped exhibit for TMS at the AAAAI Medical Conference, participated on Masto Patient Panels and Focus Groups for local medical research companies, met with State Representatives at the Boston State House for Rare Disease Day, and now serve as the TMS representative on the International Mastocytosis & Mast Cell Diseases Committee. I’m infinitely grateful to have TMS for information and support, I don’t know what I would do without them or my very supportive family. I am very excited to be able to give back a bit to TMS and look forward to working for our TMS members. I hope to help TMS folks in every way I can.

Susan Jennings, PhD

Research Committee Chair, Chronicles Committee, Website Contribution Committee

Dr. Jennings received her bachelor’s degree in Chemistry and Biochemistry from the University of California, San Diego and her PhD in Cancer Biology from Stanford University School of Medicine. Her earlier research interests focused on harnessing the power of the human immune system to fight disease and improve patient health. She has worked in the biotechnology industry and has spent many years volunteering, including for the Association for Women in Science, Girl Scouts of America, and her local school district.

Since 2009, Dr. Jennings has served on The Mastocytosis Society, Inc. (TMS) Research Committee, first as Co-Chair with Dr. Nancy Russell for seven years, and as Chair since the beginning of 2017. She serves as an adviser to our TMS Board of Directors, attends medical conferences as a representative of TMS, in both a scientific capacity and as a resource at TMS booths, and works closely with other Research Committee members, our TMS Board of Directors and our TMS Medical Advisory Board. Also as part of the Research Committee, Dr. Jennings works with other organizations, specialty physicians, government entities, and industry on joint TMS projects and in an advisory role as a representative of TMS. She serves, with Valerie Slee, RN, BSN, Chair, TMS Board of Directors, on the Mast Cell Disorders Committee of the American Academy of Allergy, Asthma and Immunology (AAAAI), of which TMS is a Lay Organization. Her activities with this committee resulted in the first ICD-10-CM code set for mast cell activation syndrome (MCAS) variants and updated codes for mastocytosis. Dr. Jennings has co-authored mast cell disease research and review articles and research presentations on behalf of TMS, including the publication of two research articles based on findings from our 2010 TMS Mast Cell Disorder Patient Survey, in collaboration with mast cell disorder specialists and others from TMS. Her latest research involves a 2018 MCAS Patient Survey, findings of which were presented at the National Institutes of Health in September 2018.

Dr. Jennings feels very strongly that, as a rare disease organization, bringing together groups within and affecting the mast cell disorder community, to explore and address the challenges these parties face, is an important way that TMS can help to improve the lives of patients, their families, and caregivers. She is highly dedicated to the successful formation of the American Initiative in Mast Cell Diseases, a future mast cell disease network within the Americas actively partners with others to develop TMS educational material for health care professionals and patients, and works to help TMS provide much-needed funding for mast cell disease research.

Judy Thompson

Copy Editor

Courtney Rabb

Fundraising Chair

Susan Jennings, PhD

Research Committee Chair, Chronicles Committee, Website Contribution Committee

Dr. Jennings received her bachelor’s degree in Chemistry and Biochemistry from the University of California, San Diego and her PhD in Cancer Biology from Stanford University School of Medicine. Her earlier research interests focused on harnessing the power of the human immune system to fight disease and improve patient health. She has worked in the biotechnology industry and has spent many years volunteering, including for the Association for Women in Science, Girl Scouts of America, and her local school district.

Since 2009, Dr. Jennings has served on The Mastocytosis Society, Inc. (TMS) Research Committee, first as Co-Chair with Dr. Nancy Russell for seven years, and as Chair since the beginning of 2017. She serves as an adviser to our TMS Board of Directors, attends medical conferences as a representative of TMS, in both a scientific capacity and as a resource at TMS booths, and works closely with other Research Committee members, our TMS Board of Directors and our TMS Medical Advisory Board. Also as part of the Research Committee, Dr. Jennings works with other organizations, specialty physicians, government entities, and industry on joint TMS projects and in an advisory role as a representative of TMS. She serves, with Valerie Slee, RN, BSN, Chair, TMS Board of Directors, on the Mast Cell Disorders Committee of the American Academy of Allergy, Asthma and Immunology (AAAAI), of which TMS is a Lay Organization. Her activities with this committee resulted in the first ICD-10-CM code set for mast cell activation syndrome (MCAS) variants and updated codes for mastocytosis. Dr. Jennings has co-authored mast cell disease research and review articles and research presentations on behalf of TMS, including the publication of two research articles based on findings from our 2010 TMS Mast Cell Disorder Patient Survey, in collaboration with mast cell disorder specialists and others from TMS. Her latest research involves a 2018 MCAS Patient Survey, findings of which were presented at the National Institutes of Health in September 2018.

Dr. Jennings feels very strongly that, as a rare disease organization, bringing together groups within and affecting the mast cell disorder community, to explore and address the challenges these parties face, is an important way that TMS can help to improve the lives of patients, their families, and caregivers. She is highly dedicated to the successful formation of the American Initiative in Mast Cell Diseases, a future mast cell disease network within the Americas actively partners with others to develop TMS educational material for health care professionals and patients, and works to help TMS provide much-needed funding for mast cell disease research.

Board of Directors

TMS Volunteers

Sandy Johnson

Gail Barbera, B.A.

Secretary, Education Chair, Volunteer Chair, Website Committee, International Mastocytosis & Mast Cell Diseases Committee,

I grew up in Massachusetts, attended Lesley College and Regis College while working at Boston Museum of Science in their Education Department. I began my professional career here as a teacher, married Stephen in 1981 and had two wonderful children, Shannon and Tony.  We moved to Scotland for a few years for my husband’s job, then when we returned I created Student Portfolio books for the Deafblind Project at Perkins School describing students’ abilities and needs for the many specialists entering their lives to reference.  Our family became involved with Hyde School in Bath, Maine and participated in their character-intensive support groups, and I was invited to continue on as a Facilitator for their Northeast Area Family Support Groups for several years.  During that time I owned a small in-home business, and worked 16 years in a busy elementary school office (retired September 2016).  I have served on the Board for our local Lakeshore Association as Communications Director advocating at several governmental levels regarding environmental issues concerning our beautiful Fort Meadow Lake community, and maintaining their Website and Facebook communications.  Our children are grown now and live (too far away!) in Louisiana and Colorado.

My Mastocytosis journey is similar to many others… In 2001, at age 45, I became covered in spots and went on to having frequent unexplained episodes of anaphylaxis. This was a very scary time for me and my family. Finally in 2004, after many doctors and hospitals, I was diagnosed with SM. Looking back through my life I can now see other much earlier health struggles that could have been related to Mastocytosis.  Thank goodness I found Rita Barlow at TMS online and would have been lost without her help and reassurance. I still deal with bouts of flushing, rashes/hives, bone pain, extreme fatigue and brain fog, but thankfully, with good medicines, haven’t had a full anaphylaxis attack since 2012.

There are so many wonderful people in TMS that have touched my heart and inspired me with their stories. I’ve enjoyed raising awareness with Mastocytosis Walks/Fundraisers, volunteered at TMS Boston Conference, helped exhibit for TMS at the AAAAI Medical Conference, participated on Masto Patient Panels and Focus Groups for local medical research companies, met with State Representatives at the Boston State House for Rare Disease Day, and now serve as the TMS representative on the International Mastocytosis & Mast Cell Diseases Committee. I’m infinitely grateful to have TMS for information and support, I don’t know what I would do without them or my very supportive family. I am very excited to be able to give back a bit to TMS and look forward to working for our TMS members. I hope to help TMS folks in every way I can.

Kathy Tomasic

Medical Conferene Project Manager

Valerie M. Slee, RN, B.S.N.

Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison, Patient Referral Coordinator,
Drug Shortage Co-Chair

I first served as the TMS Vice Chair from 2002-2009, then assumed the Chair position when my dear friend Rita Barlow stepped down due to health issues. I have also served as Liaison to the Medical Advisory Board, Research Committee, Pediatric Committee, and to the MPN and Smoldering Mastocytosis Committee. I Co-Chair the Drug Shortage Committee with Emily Menard. I obtained a Bachelor of Science in Nursing Degree from Syracuse University, summa cum laude, in 1975, and have 40 years of experience as a pediatric nurse in major hospitals including UCONN Health Center/John Dempsey Hospital Pediatric ICU and NICU, Upstate Medical Center in Syracuse, NY in Pediatrics and Pediatric ICU, St. Peter’s Hospital Albany, NY, Children’s Hospital of Philadelphia, and UMASS. My experience included many years of pediatric intensive care and pediatric hematology oncology. I also was an instructor in Pediatrics, Pediatric ICU, Fundamentals of Nursing and Maternal Child Nursing at Maria College in Albany, NY. Most recently, I was a pediatric triage nurse for Night Nurse of Framingham, MA. I am a sitting member of the Mast Cell Disorders Committee of the American Academy of Allergy, Asthma and Immunology. I collaborate with mast cell disorder patient organizations all over the world, their members and physicians. I work extensively with the TMS Research Committee, and am in touch with patients and physicians every day, as my disease allows.

I am fortunate to be happily married to Andrew Slee (41 years and counting!), have three wonderful adult children, and three amazing grandsons! I have had MCAS for many years, probably since age 6, but I was not diagnosed with a mast cell disorder until age 34. Currently, I am 63 years old. My own health has deteriorated in the last few years, and has made it necessary for me to go on disability. While I very much miss my pediatric patients, I enjoy working with the mast cell community! TMS is a wonderful organization, full of giving and supportive people who care so much for each other and for each of the members. I am proud to be Chair of these committed volunteers on behalf of our members worldwide!

Valerie M. Slee, RN, B.S.N.

Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison, Patient Referral Coordinator,
Drug Shortage Co-Chair

I first served as the TMS Vice Chair from 2002-2009, then assumed the Chair position when my dear friend Rita Barlow stepped down due to health issues. I have also served as Liaison to the Medical Advisory Board, Research Committee, Pediatric Committee, and to the MPN and Smoldering Mastocytosis Committee. I Co-Chair the Drug Shortage Committee with Emily Menard. I obtained a Bachelor of Science in Nursing Degree from Syracuse University, summa cum laude, in 1975, and have 40 years of experience as a pediatric nurse in major hospitals including UCONN Health Center/John Dempsey Hospital Pediatric ICU and NICU, Upstate Medical Center in Syracuse, NY in Pediatrics and Pediatric ICU, St. Peter’s Hospital Albany, NY, Children’s Hospital of Philadelphia, and UMASS. My experience included many years of pediatric intensive care and pediatric hematology oncology. I also was an instructor in Pediatrics, Pediatric ICU, Fundamentals of Nursing and Maternal Child Nursing at Maria College in Albany, NY. Most recently, I was a pediatric triage nurse for Night Nurse of Framingham, MA. I am a sitting member of the Mast Cell Disorders Committee of the American Academy of Allergy, Asthma and Immunology. I collaborate with mast cell disorder patient organizations all over the world, their members and physicians. I work extensively with the TMS Research Committee, and am in touch with patients and physicians every day, as my disease allows.

I am fortunate to be happily married to Andrew Slee (41 years and counting!), have three wonderful adult children, and three amazing grandsons! I have had MCAS for many years, probably since age 6, but I was not diagnosed with a mast cell disorder until age 34. Currently, I am 63 years old. My own health has deteriorated in the last few years, and has made it necessary for me to go on disability. While I very much miss my pediatric patients, I enjoy working with the mast cell community! TMS is a wonderful organization, full of giving and supportive people who care so much for each other and for each of the members. I am proud to be Chair of these committed volunteers on behalf of our members worldwide!

Emily Menard, BA

Co-Chair

Jennifer Lockhart

Advocacy Chair

Carlene Bartolotta, RN, B.S.N

Ariella Cohen

IT Chair

Jodylynn Bachiman, MS

Michelle Strah