Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison
Drug Shortage Co-Chair
Board of Directors & Committees
Meet the Board
If you are interested in serving on the board of directors, please first contact the volunteer coordinator, volunteer@tmsforacure.org.
Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison
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
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
Secretary, Volunteer Coordinator, International Mastocytosis & Mast Cell Diseases Committee, Medical Conference Project Manager
Gail Barbera
Secretary, Volunteer Coordinator, International Mastocytosis & Mast Cell Diseases Committee, Medical Conference Project Manager
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 Perkins School’s Deafblind Project 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 Medical Conferences, 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 among other things. 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.
Rosemary Schultz
Interim Treasurer
I was born and raised in Boston, Massachusetts. After graduating from Boston Latin School, I packed my bags and moved to Indiana where I completed my BS degree in Management and Finance from Purdue University’s Krannert School of Management. It was at Purdue that I met my husband of nearly 30 years who was finishing his PhD in geology. We then moved to suburban Washington, DC where I worked for USA Today before moving West to Reno/Carson City, Nevada. I earned an MBA from the University of Nevada in 1993. I have more than 20 years of work experience that includes analytical, supervision and management in finance, accounting and purchasing in a variety of mostly manufacturing settings. Our two wonderful sons were also born in Nevada! We enjoyed family skiing, golfing and hiking in the Sierra Nevada, before moving to the Houston area in 2011 when my husband embarked on a new career.
My journey that led me to TMS began with my younger son, who always had a variety of poorly understood health concerns, including being diagnosed with numerous food/environmental/pet allergies and very elevated IgE as a toddler; eosinophilic esophagitis at 8 years old; then anaphylaxis, elevated tryptase, mast cell activation, gastroparesis at 10 years old; and more recently with hereditary alpha tryptasemia and neurocardiogenic presyncope (dysautonomia). His Texas Children’s Hospital allergist recommended www.tmsforacure.org in 2015 and I became a caregiver-member shortly thereafter. We are also part of a research study at the NIH and he sees Dr. Mariana Castells at Brigham and Women’s Hospital. I feel very fortunate to have so many wonderful medical professionals’ help getting his symptoms better controlled.
I have always enjoyed volunteering – from Brigham and Women’s Hospital volunteer in the 1980’s to current-day school volunteer. Now, it is with great privilege that I serve with the TMS team of volunteers to give back to the mast cell community!
Courtney Rabb
Community Engagement Chair
Rita Barlow
Retired, Director Emeritus
Having been invited to the very first TMS Board meeting in 1994, I attended as a patient. TMS has always been structured by patients and caregivers. I became a board member in 2002, and except for 1 year leave due to health issues, have served to “pay it forward” since that time. Even with masto memory issues I will never forget the hearts and hands that reached out to me in those early days. Therefore, my position today as Vice Chair/Support & Advocacy is the best spot ever, a dream come true.
I have been married to my best friend and caregiver, Jim, for 46 years and together for 51 years. We have 5 beautiful daughters, 15 grandblessings, and 3 great grands. Getting sick was the pits, but the lifelong friendships and support have been amazing. (Note: Jimmy Barlow, Rita’s husband, passed away suddenly on August 28, 2016 of a heart attack while at home with Rita. Jim was an amazing husband, father, grandfather, great-grandfather, and friend to many of us at TMS. He will be forever remembered with love.)
[Rita retired from TMS BOD in 2018. She is now Director Emeritus in gratitude for her many years of service. We wish her every happiness and know she looks forward to spending time with her grands and great grands!]
Doreen Sardilli
Support Chair
Committees
Nominating Committee
Graphic Design
International Mastocytosis & Mast Cell Diseases Committee
Gail Barbera
Secretary, Volunteer Coordinator, International Mastocytosis & Mast Cell Diseases Committee, Medical Conference Project Manager
Gail Barbera
Secretary, Volunteer Coordinator, International Mastocytosis & Mast Cell Diseases Committee, Medical Conference Project Manager
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 Perkins School’s Deafblind Project 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 Medical Conferences, 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 among other things. 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
Advocacy
Jennifer Lockhart
Advocacy Special Projects
Judith Emmel
Alyssa Silkwood
Barbara Ruby, MA
Advocacy Chair, Advocacy/Research Liaison
Education
Gail Barbera
Secretary, Volunteer Coordinator, International Mastocytosis & Mast Cell Diseases Committee, Medical Conference Project Manager
Gail Barbera
Secretary, Volunteer Coordinator, International Mastocytosis & Mast Cell Diseases Committee, Medical Conference Project Manager
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 Perkins School’s Deafblind Project 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 Medical Conferences, 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 among other things. 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
Special Projects
Nicole Fox MSN, RN, OCN
Education Chair
Martha Barcenas-Mooradian, PhD
Education/Research Liaison, Hispanic Outreach/Translation
Patient Care Coordination
Jan Hempstead, RN
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
Pediatric Committee
Jennifer Mohr
Stacy Sheldon
Support/Pediatrics Liaison
Advanced Variants Committee
Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison
Drug Shortage Co-Chair
Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison
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)
Support Groups Committee
Stacy Sheldon
Support/Pediatrics Liaison
Doreen Sardilli
Support Chair
Volunteer Coordinator
Gail Barbera
Secretary, Volunteer Coordinator, International Mastocytosis & Mast Cell Diseases Committee, Medical Conference Project Manager
Gail Barbera
Secretary, Volunteer Coordinator, International Mastocytosis & Mast Cell Diseases Committee, Medical Conference Project Manager
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 Perkins School’s Deafblind Project 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 Medical Conferences, 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 among other things. 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.
NORD Representatives and Political Advocacy Committee
Fundraising Committee
Research Committee
Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison
Drug Shortage Co-Chair
Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison
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
Susan Jennings, PhD
Research Committee Chair, Chronicles 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, MA
Advocacy Chair, Advocacy/Research Liaison
Martha Barcenas-Mooradian, PhD
Education/Research Liaison, Hispanic Outreach/Translation
Website Contribution Committee
Gail Barbera
Secretary, Volunteer Coordinator, International Mastocytosis & Mast Cell Diseases Committee, Medical Conference Project Manager
Gail Barbera
Secretary, Volunteer Coordinator, International Mastocytosis & Mast Cell Diseases Committee, Medical Conference Project Manager
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 Perkins School’s Deafblind Project 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 Medical Conferences, 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 among other things. 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
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.
Chronicles Committee
Judy Thompson
Copy Editor
Susan Jennings, PhD
Research Committee Chair, Chronicles 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.
Annual Conference Planning
Medical Conference Planning Committee
Gail Barbera
Secretary, Volunteer Coordinator, International Mastocytosis & Mast Cell Diseases Committee, Medical Conference Project Manager
Gail Barbera
Secretary, Volunteer Coordinator, International Mastocytosis & Mast Cell Diseases Committee, Medical Conference Project Manager
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 Perkins School’s Deafblind Project 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 Medical Conferences, 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 among other things. 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.
Grant Committee
Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison
Drug Shortage Co-Chair
Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison
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!
Drug Shortage Committee
Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison
Drug Shortage Co-Chair
Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison
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