Translations may not always be accurate.
Connect Clinical Trials Volunteer Donate Now

BECOME A SUPPORTER

MY STORY

STATE RESOURCES

VIDEOS

SHOP

 

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
Marilyn Bennett
Kaitlyn Brennan
Kimberly Dunn Carolan
Kathryn Caron
Nancy Lynn Carter
Suzanne Chilson
Livia Cooper
Cathy Cuttita
Emily Escobar
Yadie Galarza
Alexis Gratton
Kym Hall
Colleen Joyce
Christine Jubelt
Joyce Hanna
Nicole Ingraffia
Elizabeth Kenny-Foggin
Shaz Kramer
Jennifer Krawiec
Susan Lazar
Becky Leron
Irys Luna
Ruth Mclean
Jennifer Mormile
Kendra Naylor
Lavaanya Pasupuleti, DO
Kimberly Perry
Sarah Petrassi
Jack Rushing
Jennifer Ryan
Brook Schmidtke
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

Marilyn Bennett

Parent Advocate 
Insurance Committee
mbennett@tsfusa.org

My daughter, Kellie, was diagnosed as hearing impaired at the age of 4; however, the diagnosis of Turner Syndrome did not come until the age of 13.  The Chief of Endocrinology at Baystate Medical Center sat with my husband and me and explained Kellie’s diagnosis; there was very little information in print and two of Kellie’s pediatricians had missed the diagnosis.  I had to advocate with the school system to have them provide an IEP and I became a member of the Parent’s Advisory Board at Willie Ross School for the Deaf when it was decided Kellie would be mainstreamed into the public school system.  Kellie is now in her mid-forties.  She had a stroke in her thirties and is struggling with other physical complications of Turner’s syndrome while working 32 hours a week just to be eligible for medical insurance.  However, her insurance will not provide for hearing aids which she must have in order to continue to work, or diabetes testing supplies.  It is my goal to pursue all avenues to find proper insurance, not only for Kellie, but for other women with Turner’s who find themselves in the middle of insurance company red tape and state programs that fail to provide coverage for her medical requirements.  It is a dilemma that my daughter cannot navigate by herself so I am dedicated to advocating for legislation that will provide for women with Turner Syndrome. 
I have a B.S. in Criminal Justice and worked as a paralegal for 15 years.  I currently work as a Client Loyalty Specialist for a software company as a ‘remote’ employee working out of my home office.   


Kaitlyn Brennan

Jr. Program Assistant
Development Coordinator

Kaitlyn Brennan is a student at Monmouth University majoring in Anthropology with a minor in Health Studies. By volunteering at the Turner Syndrome Foundation she hopes to learn about the health aspect of Turner Syndrome while helping girls along the way and advocating for people to be aware of Turner Syndrome. 


Nancy Lynn Carter


National Council of State Leaders - South Carolina
Patient Advocate and 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.


Livia Cooper

National Council of State Leaders - New York
Insurance Committee, Legal Advocate
lcooper@tsfusa.org

Livia Cooper was a tenured elementary school teacher in the Lakewood, New Jersey school system before relocating to Suffolk County, Long Island, in New York, where she is currently residing. Always civically minded, Livia attended Jacob D. Fuchsberg School of Law where she obtained a Juris Doctor and is admitted to the New York State Bar. Certified in Family Court Mediation she  volunteered to mediate  custody and visitation matters for the Nassau County Court System. After retiring from the practice of law, Livia worked with her husband in his Family Medicine practice until his retirement. Livia has been assisting families facing huge medical bills from out of network providers, writing appeals and negotiating settlements, where the bills have either been reduced or forgiven. She looks forward to volunteering with the Turner Syndrome Foundation.
Livia Cooper was featured in 2013 New York Times article: New York Times article:
Out of Network, Not By Choice, and Facing Huge Health Bills

Joyce Hanna

Jr. Program Assistant -
Research Coordinator

Joyce Hanna, a recent graduate from Rutgers University holds a BA degree in Psychology and has experience working in the Social Psychology Laboratory at Rutgers University. Her voluntary role as Jr. Program Assistant - Research Coordinator with TSF is to increase participation in studies by creating a positive outreach effort. If you would like more information about current research initiatives, please contact Joyce at info@turnersyndromefoundation.orgResearch Coordinator

Nicole Ingraffia

Jr. Program Assistant-
Case Coordinator

Nicole is student of Monmouth University and is majoring in Health Studies. With this degree, she has hopes of becoming an Occupational Therapist. By volunteering at Turner Syndrome Foundation she is looking forward to learning more about Turner Syndrome, spreading awareness, and making a difference. 


Colleen Joyce

National Council of State Leaders - Connecticut 
Patient Advocate
cjoyce@tsfusa.org

Colleen Joyce was diagnosed with Turner Syndrome at the age of 3 after she fell off the growth chart. She received growth hormone from ages 4-15 and estrogen therapy from age  of 15 on. She has had 9 sets of tubes because of chronic ear infections. She embraces her condition and has started a website about her life with Turner Syndrome where she is able to build a community with others like her who are living a full and productive life with Turner Syndrome. Her website is www.freewebs.com/colleenjoyce.  Colleen volunteers with the Turner Syndrome Foundation to blog about the teen/young adult social groups and can publicize other upcoming events. Colleen is presently attending Curry College in pursuit of a nursing degree.



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 healthcare initiatives.




Sarah Petrassi

Special Events Co-Chairperson
spetrassi@tsfusa.org




Jack Rushing

Parent Advocate, Insurance Committee

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

Alexis Gratton

Alexis is a student of Monmouth University studying Sociology. By volunteering at the Turner Syndrome Foundation, she hopes to learn more about healthcare initiatives in her role as Jr. Program Assistant. Alexis hopes to learn what goes into making a foundation work, while helping TS girls along the way. 


Irys Luna

Irys Luna is a bi-lingual International Business student of Monmouth University. She has joined the staff of the Turner Syndrome Foundation to assist with the National Council of State Leaders, a voluntary group of individuals dedicated to the mission. Her primary role is to identify, vet, and orientate the advocacy team, and as well to provide ongoing support.


Sheila Tweeddale


National Council of State Leaders - Massachusetts
Parent Advocate & Special Fundraising
Email: stweeddale@tsfusa.org


Ruth McLean


National Coucil of State Leaders - New York
Parent Advocate - Women's Group
Email: rmclean@tsfusa.org


Kimberly Perry
 

National Coucil of State Leaders - Alaska
Parent Advocate
Email: kperry@tsfusa.org

My daughter Ashley was diagnosed with Turner Syndrome early in the second trimester.  We were not familiar with Turner Syndrome and did a ton of research and read anything and everything we could find. We were not only terrified, but astounded to learn that only 1% of female fetuses diagnosed with TS are ever delivered alive. We spent the next 6 months going to ultrasounds every week and praying there was no fluid developing. When they started to see fluid develop around her heart it lowered her chances of survival to .5 of 1%. We were devastated, but this little girl is a fighter and she proved it by making it to where she is today. The doctors were amazed that the fluid not only stopped accumulating, but went away. -- A true miracle!
 
Ashley is 10 years of age, and she is the 2014 Alaska Ambassador for The Children's Miracle Network and now I am the chairperson for the Turner Syndrome Foundation’s National Council of State Leaders for Alaska. Unique to Alaska, we are collaborating with Wade Marrs, friend and musher who is determined to dedicate his Iditarod miles to spread awareness of Turner Syndrome. Ashley's goal is to not only spread awareness but to show that these young ladies can do anything despite certain limitations, and can live a long and fulfilling life. I welcome Alaskan’s to join me in supporting this fine mission.
 


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


Brook Schmidtke

Patient Advocate
NCSL - Wisconsin
bschmidtke@tsfusa.org
My name is Brooke Schmidtke. I am a 20 year old who grew up in a little village called Rosendale in Wisconsin. I’m going to school for Certified Medical Assistant and Phlebotomy. Right now, I’m working as a CNA in a nursing home to help the elderly! I love taking care of others. It warms my heart to see the appreciation when you help them out. Little things to us are big to them! In my free time I like to read, hang out with friends, and travel!



Emily Escobar

Junior Program Assistant
Team TSF Coordinator
eescobar@tsfusa.org

Emily Escobar is in her Junior year of studies at Monmouth University majoring in Marine Biology. She continues to increase her knowledge of nonprofit business practices and marketing through her role as Team TSF Coordinator.





back to top