Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison, Patient Referral Coordinator,
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, 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!
Rita Barlow
Vice Chair, Patient Support and Advocacy, Support Group Chair, Volunteer Committee
Rita Barlow
Vice Chair, Patient Support and Advocacy, Support Group Chair, Volunteer Committee
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.)
Gail Barbera, B.A.
Secretary, Education Chair, Volunteer Chair, Website Committee, Chronicles Committee,
Gail Barbera, B.A.
Secretary, Education Chair, Volunteer Chair, Website Committee, Chronicles 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 local family support groups, then I was asked 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 levels regarding environmental issues concerning our beautiful Fort Meadow Lake community, and maintaining their website 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, and met with State Representatives at the Boston State House for Rare Disease Day. 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.
Stacy Sheldon
Pediatrics Chair
As the mother of three boys, my family’s experience with Mastocytosis began over six years ago when my youngest son Caleb was diagnosed at 10 months of age with Pediatric Mastocytosis. Following his diagnosis, it was then discovered that I have Mast Cell Activation Disorder. The past few years have been quite a learning experience, and I am grateful for the information and support provided by TMS as my family learned to navigate this new world.
From 2011 to 2014, I served Mastokids in various roles, including Grant Committee Member, Board of Director, Treasurer, and President. In these positions, I worked with TMS to fund grants for Mastocytosis research. I have also been involved with the New England Support Group and local fundraisers. My family formed the group “Caleb’s Hope” for Erica’s Walk for a Cure in 2011. In 2012, I, along with my husband Steve, my parents and other family members, organized the fundraiser “Caleb’s Hope – A Night of Hope for Mastocytosis” in Wakefield, MA in honor of my son Caleb. The funds raised were donated to TMS, Mastokids, and the Center for Mastocytosis Excellence at Brigham & Women’s Hospital in Boston.
I am very excited to be joining the TMS board as your Pediatric Chair. I look forward to giving back to the TMS community, and I hope to be able to provide the same support and encouragement to those families facing a mast cell disorder diagnosis that my family received.
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.
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
Fundraising Chair
Committees
Education
Gail Barbera, B.A.
Secretary, Education Chair, Volunteer Chair, Website Committee, Chronicles Committee,
Gail Barbera, B.A.
Secretary, Education Chair, Volunteer Chair, Website Committee, Chronicles 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 local family support groups, then I was asked 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 levels regarding environmental issues concerning our beautiful Fort Meadow Lake community, and maintaining their website 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, and met with State Representatives at the Boston State House for Rare Disease Day. 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
Patient Care Coordination
Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison, Patient Referral Coordinator,
Drug Shortage Co-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!
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.
Pediatric Committee
Stacy Sheldon
Pediatrics Chair
As the mother of three boys, my family’s experience with Mastocytosis began over six years ago when my youngest son Caleb was diagnosed at 10 months of age with Pediatric Mastocytosis. Following his diagnosis, it was then discovered that I have Mast Cell Activation Disorder. The past few years have been quite a learning experience, and I am grateful for the information and support provided by TMS as my family learned to navigate this new world.
From 2011 to 2014, I served Mastokids in various roles, including Grant Committee Member, Board of Director, Treasurer, and President. In these positions, I worked with TMS to fund grants for Mastocytosis research. I have also been involved with the New England Support Group and local fundraisers. My family formed the group “Caleb’s Hope” for Erica’s Walk for a Cure in 2011. In 2012, I, along with my husband Steve, my parents and other family members, organized the fundraiser “Caleb’s Hope – A Night of Hope for Mastocytosis” in Wakefield, MA in honor of my son Caleb. The funds raised were donated to TMS, Mastokids, and the Center for Mastocytosis Excellence at Brigham & Women’s Hospital in Boston.
I am very excited to be joining the TMS board as your Pediatric Chair. I look forward to giving back to the TMS community, and I hope to be able to provide the same support and encouragement to those families facing a mast cell disorder diagnosis that my family received.
Kolleen Barlow
Advanced Variants Committee
Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison, Patient Referral Coordinator,
Drug Shortage Co-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!
Michele Q. Kress
Smoldering Systemic Mastocytosis (SSM)
Support Groups Committee
Rita Barlow
Vice Chair, Patient Support and Advocacy, Support Group Chair, Volunteer Committee
Rita Barlow
Vice Chair, Patient Support and Advocacy, Support Group Chair, Volunteer Committee
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.)
Gail Barbera, B.A.
Secretary, Education Chair, Volunteer Chair, Website Committee, Chronicles Committee,
Gail Barbera, B.A.
Secretary, Education Chair, Volunteer Chair, Website Committee, Chronicles 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 local family support groups, then I was asked 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 levels regarding environmental issues concerning our beautiful Fort Meadow Lake community, and maintaining their website 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, and met with State Representatives at the Boston State House for Rare Disease Day. 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.
Volunteer Committee
Rita Barlow
Vice Chair, Patient Support and Advocacy, Support Group Chair, Volunteer Committee
Rita Barlow
Vice Chair, Patient Support and Advocacy, Support Group Chair, Volunteer Committee
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.)
Gail Barbera, B.A.
Secretary, Education Chair, Volunteer Chair, Website Committee, Chronicles Committee,
Gail Barbera, B.A.
Secretary, Education Chair, Volunteer Chair, Website Committee, Chronicles 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 local family support groups, then I was asked 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 levels regarding environmental issues concerning our beautiful Fort Meadow Lake community, and maintaining their website 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, and met with State Representatives at the Boston State House for Rare Disease Day. 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
Nicole Rogne
Fundraising
Courtney Rabb
Fundraising Chair
Research Committee
Susan Jennings, PhD
Research Committee Chair, Chronicles Committee, Website Contribution Committee
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.
For seven years, Dr. Jennings has co-chaired The Mastocytosis Society, Inc. (TMS) Research Committee with Dr. Nancy Russell. In that capacity, 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 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 October 2016 implementation of the first ICD-10-CM (Tenth Edition of the International Classification of Diseases-Clinical Manifestation) code set for mast cell activation syndrome variants. Along with Dr. Russell, Dr. Jennings also co-chairs our TMS Patient Survey Committee, which successfully published the first research article by TMS, in collaboration with mast cell disorder specialists. The committee has presented their research at AAAAI Annual Meetings and is currently working on a second research article related to the patient survey.
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 our organization can work to help improve the lives of patients, their families and caregivers. She is actively involved in TMS efforts to support the formation of a national clinical and research network for mast cell disorders, 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 disorder research.
Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison, Patient Referral Coordinator,
Drug Shortage Co-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!
Website Contribution Committee
Susan Jennings, PhD
Research Committee Chair, Chronicles Committee, Website Contribution Committee
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.
For seven years, Dr. Jennings has co-chaired The Mastocytosis Society, Inc. (TMS) Research Committee with Dr. Nancy Russell. In that capacity, 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 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 October 2016 implementation of the first ICD-10-CM (Tenth Edition of the International Classification of Diseases-Clinical Manifestation) code set for mast cell activation syndrome variants. Along with Dr. Russell, Dr. Jennings also co-chairs our TMS Patient Survey Committee, which successfully published the first research article by TMS, in collaboration with mast cell disorder specialists. The committee has presented their research at AAAAI Annual Meetings and is currently working on a second research article related to the patient survey.
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 our organization can work to help improve the lives of patients, their families and caregivers. She is actively involved in TMS efforts to support the formation of a national clinical and research network for mast cell disorders, 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 disorder research.
Gail Barbera, B.A.
Secretary, Education Chair, Volunteer Chair, Website Committee, Chronicles Committee,
Gail Barbera, B.A.
Secretary, Education Chair, Volunteer Chair, Website Committee, Chronicles 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 local family support groups, then I was asked 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 levels regarding environmental issues concerning our beautiful Fort Meadow Lake community, and maintaining their website 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, and met with State Representatives at the Boston State House for Rare Disease Day. 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.
Chronicles Committee
Susan Jennings, PhD
Research Committee Chair, Chronicles Committee, Website Contribution Committee
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.
For seven years, Dr. Jennings has co-chaired The Mastocytosis Society, Inc. (TMS) Research Committee with Dr. Nancy Russell. In that capacity, 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 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 October 2016 implementation of the first ICD-10-CM (Tenth Edition of the International Classification of Diseases-Clinical Manifestation) code set for mast cell activation syndrome variants. Along with Dr. Russell, Dr. Jennings also co-chairs our TMS Patient Survey Committee, which successfully published the first research article by TMS, in collaboration with mast cell disorder specialists. The committee has presented their research at AAAAI Annual Meetings and is currently working on a second research article related to the patient survey.
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 our organization can work to help improve the lives of patients, their families and caregivers. She is actively involved in TMS efforts to support the formation of a national clinical and research network for mast cell disorders, 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 disorder research.
Gail Barbera, B.A.
Secretary, Education Chair, Volunteer Chair, Website Committee, Chronicles Committee,
Gail Barbera, B.A.
Secretary, Education Chair, Volunteer Chair, Website Committee, Chronicles 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 local family support groups, then I was asked 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 levels regarding environmental issues concerning our beautiful Fort Meadow Lake community, and maintaining their website 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, and met with State Representatives at the Boston State House for Rare Disease Day. 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.
Judy Thompson
Copy Editor
Courtney Rabb
Fundraising Chair
Annual Conference Planning
Medical Conference Planning Committee
Gail Barbera, B.A.
Secretary, Education Chair, Volunteer Chair, Website Committee, Chronicles Committee,
Gail Barbera, B.A.
Secretary, Education Chair, Volunteer Chair, Website Committee, Chronicles 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 local family support groups, then I was asked 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 levels regarding environmental issues concerning our beautiful Fort Meadow Lake community, and maintaining their website 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, and met with State Representatives at the Boston State House for Rare Disease Day. 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, Patient Referral Coordinator,
Drug Shortage Co-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!
Drug Shortage Committee
Valerie M. Slee, RN, B.S.N.
Chair, Medical Advisory Board Liaison, Research Advisory Committee Liaison, Patient Referral Coordinator,
Drug Shortage Co-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!
Emily Menard, BA
Co-Chair