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Committee Participatory Volunteers


Committees

Areas: Advocacy, Awareness, Education and Research. Volunteers with an interest and expertise in publicity, journalism, marketing, social media, IT, fundraising, special events, clinical research, medical practice, education, policy, patient advocacy, and more..

Committee volunteers are integral to the function of the Foundation. We applaud the time and dedication to the Foundation with an acknowledgement at an annual celebration held in December.  New volunteers are sought for an array of activities. If you would like to join a committee, please complete a volunteer application and agreement and send it to info@tsfusa.org.


Some of our volunteers are impacted by Turner Syndrome, and some are not. Some will volunteer regularly, while others will contribute once or annually, or whenever needed.  
Here is a current list of committee participatory volunteers: 

JoLynn Backes
Kimberly Dunn Carolan
Kathryn Caron
Nancy Lynn Carter
Suzanne Chilson
Cathy Cuttita
Emily Escobar
Yadie Galarza
Kym Hall
Christine Jubelt
Elizabeth Kenny-Foggin
Shaz Kramer
Jennifer Krawiec
Susan Lazar
Becky Leron
Ruth Mclean
Jennifer Mormile
Kendra Naylor
Lavaanya Pasupuleti, DO
Sarah Petrassi
Jennifer Ryan
Doreen Sullivan
Sheila Tweeddale


JoLynn Backes

Patient Advocate, Newsletter, Council on Infertility
jbackes@tsfusa.org

JoLynn Backes is a writer, teacher, advocate, wife, and mother. She was diagnosed with Turner Syndrome at the age of five, but has not let that slow her down.  She has a B.A. as well as a Masters of Education; currently, she teaches online business and literature classes.
Her involvement with the Turner Syndrome Foundation began shortly after she moved to New York from Chicago in 2008. In 2012 she underwent IVF with eggs donated from her sister. She now has an 18 month old son who keeps her extremely busy when she isn’t putting together the Foundation’s newsletter or working to raise awareness as part of the Council on Infertility



Nancy Lynn Carter


National Council of State Leaders - South Carolina
Educator
ncarter@tsfusa.org

My name is Nancy Lynn Cater, I'm 45 years old and I live in Florence, SC. I was diagnosed with Turner Syndrome when I was only a few months old. I have wanted to reach out to others with Turner Syndrome for a very long time but never quite found an "open door", until now. My husband, John, is my unfailing support system and encouragement. I am a teacher and I want to use my talents to educate and advocate for patients and families living with Turne rSyndrome. I hope to raise awareness because the indicators can easily be dismissed as "differences". Early diagnosis and treatment can and does make a difference.


Elizabeth Kenny-Foggin

Elizabeth Kenny-Foggin, M. A., M.S., OG-TT
Dyslexia Specialist & Orton Gillingham Teacher Trainer (IMSLEC)
Multisensory Structured Language Instruction,
Literacy Assessments, & Educational Consultation
ekennyfoggin@tsfusa.org




Kendra Naylor


National Council of State Leaders - Louisiana
Registered Nurse
knaylor@tsfusa.org

I am forty years old and was diagnosed with mosaic Turner Syndrome at age seven. A few years later, I was blessed to be able to participate in a study using growth hormone therapy through Stanford University until my growth stopped at 4' 10".  My main health issues are hypothyroidism, infertility and early menopause.  After working several years as a nurse's assistant, I graduated as a Registered Nurse at age 20!  I have been married eighteen years with two wonderful adopted children, whom I now homeschool.

Since the growth hormone study, I have had almost no contact with any support group or found many physicians knowledgeable about Turner Syndrome.  I feel it is time to speak up and help those whose lives have been touched by Turner Syndrome and I want them to know they are not alone. I would love to see more people educated about the diagnosis and early treatment of Turner Syndrome to help all these girls reach their full potential.




Laavanya Pasupuleti, DO

Healthcare Initiatives
lpasupuleti@tsfusa.org

Laavanya Pasupuleti, DO received her B.A. from Rutgers University, and Doctor of Osteopathy (D.O.) from The Philadelphia College of Osteopathic Medicine.  Laavanya has a wide variety of experience in health care including but not limited to clinical medicine, public health, and health care IT. She is very excited to be drawing upon her extensive health care background to further the mission of the Turner Syndrome Foundation and to empower individuals. Laavanya's main area of focus will be on development.

Sarah Petrassi

Special Events Co-Chairperson
spetrassi@tsfusa.org

Jennifer Ryan

TSF Writer/Blogger
jryan@tsfusa.org



Doreen Sullivan
Special Events Co-Chairperson
dsullivan@tsfusa.org




Tammy Topoleski


Program Assistant and 
Social Media 
ttanski@tsfusa.org




Kimberly Dunn Carolan


Parent Advocate, Social Work and Life Coaching
kcarolan@tsfusa.org

As an active volunteer with the Turner Syndrome Foundation, I contribute to patient advocacy with a degree in social work. Over the years I have volunteering experience with several organizations and received leadership training for children and adults. My younger daughter was diagnosed with Turner Syndrome at birth. With this added responsibility I was forced into a new dimension of motherhood to organize and manage multiple illnesses, doctors and medical records. Most importantly, I had to learn to be my child's advocate. All of these things have lead me to Life Coaching to help and encourage others. My family members are active contributors to the Foundation, and have teams running in the New Jersey Marathon and Rock 'n' Roll St. Pete Marathon.



Kathryn Caron

Parent Advocate
National Council of State Leaders - Maine
kcaron@tsfusa.org

My daughter, Brooke, was diagnosed with Turner Syndrome at the age of 10 after a year of not growing. For six years we had no one to talk to in regards to this new information. Her providers did what they could to keep us aware of the particular areas to watch out for but emotionally on every other issue we had no one to talk to. I reached out to other organizations across the country and got little back. After hearing from Brooke’s doctor that they see Turner girls occasionally and that they believed many may be left undiagnosed, it caught my eye when I saw your website! I then saw how involved you were with forming teams and making sure awareness was getting out there. That is when I decided, “This is it! These are the people!” That is why I came to New Jersey to meet the people involved with the Turner Syndrome Foundation. It is my mission as a mother to bring awareness back to Maine. My goals are to help doctors reach the families missing out on a diagnosis and to help my daughter, Brooke. The more awareness there is, the more the wheels keep moving. I intend to reach our State House at some point this year and do whatever I can as a parent to help your foundation and our girls! 




Kym Hall


Patient Advocate, Special Education & Counseling
khall@tsfusa.org

I am in my forties and was diagnosed at sixteen years of age with Turners Syndrome.  I am the youngest of six children along with my twin brother Kyle. I have a great family who are very supportive.  Born and raised in Paterson NJ .  I never new TS existed before my diagnosis at  UMDNJ where they helped me connect with other girls that also had Turner Syndrome. In my spare time I advocate and research for my benefit and others, and have been a volunteer with Turner Syndrome Foundation’s legislative activities in the State of New Jersey. I currently work as a Teacher Tech for the State of NJ and live in North Plainfield with my Husband Cameron.



Christine Jubelt

Parent Advocate, Registered Nurse, MBA
National Council of State Leaders Chairperson - Florida
cjubelt@tsfusa.org

Recently appointed to the newly formed advocacy committee of the Turner Syndrome Foundation, Inc. Mrs. Jubelt held the role of past president and originator of TSSUS Florida Chapter and is parent of a 22-year-old daughter with mosaic TS.  She is responsible for programs in the Southeast leading to early diagnosis of TS and recently promoting and facilitating a high-risk team of well-qualified physicians to facilitate delivery of newborn TS babies.  She is very active in advocacy and promoting education and awareness working with physicians and medical professionals in the Southeast as well as families newly diagnosed and affected by TS.  Mrs. Jubelt is CEO and managing member of APM Services, LLC, a Real Estate Investment Management firm. She has a BS in Nursing and Business in addition to an MBA (International Business) from the Crummer Graduate School of Business, Rollins College, Winter Park, Florida.



Jennifer Krawiec

Patient Advocate
A major goal of Jennifer is to have a social group created for young women with Turner Syndrome. You never want to feel like you are alone in having your condition and when she was first diagnosed she didn’t have anyone like her to talk to about her condition. She proposed the idea of having social programs for others with the condition after participating in a research study where she for the first time met other young women with the condition. How does she feel that this will benefit others like her? She said, “I believe the social group will benefit girls with Turners because since there isn’t enough information out there, families and women with Turners don’t know where to turn to. There is a great need to share resources about finding knowledgeable doctors, enrichments, and having the opportunity to speak with others who truly understand. Just to have that kind of support is amazing. Everyone can say I understand, even a psychologist can say they understand, but in reality they have no idea of your feelings. I felt so alone that it would have been nice to talk to someone with Turners so they can help me and guide me. I don’t want any girl to have to feel all that I felt and go through depression. This is why this support group is amazing so girls have a friend that is exactly like them and can help them understand that it’s going to be okay.”
Jennifer is a recent graduate of Kean University and will pursue a PhD in child psychology.



Susan Lazar


Lic. Clinical Social Worker
slazar@tsfusa.org
201-724-6999



Becky Leron

Parent Advocate
NCSL - TX



Sheila Tweeddale

Parent Advocate & Special Fundraising
NCSL - Massachusetts
stweedale@tsfusa.org




Suzanne Chilson
Marketing
schilson@tsfusa.org



Ruth McLean, NY
Parent Advocate
rmclean@tsfusa.org



Cathy Cuttita
Parent Advocate and Educator
ccuttita@tsfusa.org

Cathy Cuttita grew up in Northern New Jersey and holds a Bachelors Degree in Communications. She is a Certified Elementary Education Teacher. Currently, she is working as a reading support specialist. Her passion in life is teaching and her goal is to be a successful advocate for each child in the classroom. She and her husband have three children, one of whom has Turners Syndrome.  Cathy became a volunteer with TSF in 2008 before becoming a member of the Education Committee. She is committed to improving the lives of all TS girls.



Yadira Galarza
Parent Advocate
ygalarza@tsfusa.org




Jennifer Mormile
Adult Advocate
jmormile@tsfusa.org




Shaz Kramer, NJ, NC, UT
Parent Advocate
skramer@tsfusa.org



Emily Escobar

Junior Program Assistant
eescobar@tsfusa.org

Emily Escobar is in her Junior year of studies at Monmouth University majoring in Marine Biology. She is employed through MU's work study program to increase her knowledge of nonprofit business practices and marketing.





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