Parkinson Advocates Committee

 

Parkinson Advocates Committee  

Co-chair:

Fulvio Capitanio

Co-chair:

Israel Robledo

 

Artur Amich, MA

 

Francesca de Bartolomeis

  Maria de Leon, MD 
 

Kat Hill, RN 

Jennifer Ley, RN

Soania Mathur, MD

Joy Milne, RN 

Sara Riggare, MSc

 

Martin Taylor

 

Roland Weber, BA

  Fred Woodleif, DDS 

Fulvio Capitanio 

Israel Robledo

Artur Amich, MA

Francesca de Bartolomeis Francesca de Bartolomeis she was born in Milan (Italy), she specializes in psychomotricity for children, adults and the elderly in the school of Professor Cecilia Morosini, with a thesis dedicated to the holistic treatment of Parkinson's dedicated to her father, a young man with Parkinson's (12 april 2007). Expert in theater, dance, body reading techniques, basal stimulation, active body mediation techniques and Ayurvedic massages. He has taught and conducted training courses for professional educators, hippotherapists and teachers. He has participated in national and international conferences related to Parkinson's. In Italy he collaborates with the Italian Parkinson Association (AIP) and with the neurologist prof. G. Pezzoli. She collaborates with the Namasté Cultural Association (Italy) and collaborates with them as coordinator of consultants, psychomotor, event organizer and public relations manager. As a psychomotrician, she co-conducted dance groups for 10 years for people with Parkinson's and their families together with a colleague with experience in the field of biodanza. With the Namasté association, he attended the World Parkinson Congress (WPC) in Portland in 2016. She collaborates with the Fuerte Es La Vida Parkinson No Limits no profit association based in Fuerteventura (Canary Island) as consultant coordinator, psychomotrician, event organizer and public relations manager. During the World Parkinson Congress in Kyoto in june 2019 she represented the consultants of the Fuerte es la Vida Parkinson No Limits association based in Fuerteventura (Canary Island), where she currently resides.

Maria DeLeonMaria de Leon, MD is a fellowship trained movement disorder specialist as well as an avid research advocate. Over the last decade, she has spent most of it her time championing women’s issues and setting ground for understanding of gender differences in neurological diseases particularly that of PD; while attempting to decrease the disparity in healthcare treatment among minorities through her work as part of PAIR (Parkinson’s Advocates in Research) program. She served as a member of PPAC (People with Parkinson’s Advisory Committee) for 4 years for Parkinson’s Disease Foundation (now known as Parkinson’s Foundation) and has been instrumental in developing the ‘Women & PD initiative.’ As such she wrote the first book for women with PD addressing the gender differences. She has also authored 2 other books and several other publications– “Viviendo mas alla...” (Living beyond...) takes into account the cultural barriers that exist for Hispanics to obtain diagnosis and treatment for PD along with the obstacles that preclude them from participating in clinical research. This has led to an extensive collaboration with the Hispanic Outreach program through MACP (Muhammad Ali Center of Parkinson’s). Maria is also part of Hispanic Parkinson Advisory Council (HPAC). She was also a speaker at a First Hispanic Outreach conference. Further, she continues to serve as a public policy advocate for Michael J Fox Foundation working closely with the DOD in helping secure grant money for Parkinson’s research. She also is a blogger for Brain and Life magazine, health union and her personal blogs defeatparkinsons.com and parkinsonsdiva.org the latter concentrating on women’s issues in living with chronic illness and PD. Since her diagnosis with YOPD, her commitment to helping improve research disparity has solidified. Dr. De León received her B.A from the University of Pennsylvania and her M.D. from Hahnemann Medical School.

Kat HillKat Hill, RN is a retired Nurse Midwife who delivered over 800 babies in her career. She retired after being diagnosed with Young Onset Parkinson’s disease in 2015. Now she writes, speaks and advocates for living with resilience. Kat and her husband Ken have raised three bright and spirited children in Portland, Oregon. When not traveling, she can be found writing, painting or sewing with Baxter, her Yorkshire Terrier, by her side.



Jennifer Ley, RN

Soania Mathur, MD

Joy MilneJoy Milne, RN has been given the title of “Super Smeller”. It is a genetic trait of Hyperosmia with Synesthesia, resulting in an acute sense of smell, with related effects. Living with Parkinson’s disease for over 32 years, Joy first smelt a change in her Husband’s odor twelve years before he was diagnosed. It was only while attending their first Parkinson’s UK meeting that Joy realised that the other people in the room with Parkinson’s had the same smell. As a Doctor and a Nurse Joy and Les realised the importance that this could have in the diagnosis of Parkinson’s. Since that time, Joy’s ability has inspired research at the Universities of Manchester and Edinburgh. She is currently working part time as a Research Associate in the Manchester Institute of Biotechnology, on BBSRC and Research England funded programs to produce a confirmatory diagnostic test for PD. She has made numerous media appearances and is an advocate for patients and for YoPD.

Sarah Riggare

Sara Riggare, MSc lives in Stockholm, Sweden and holds a MSc in chemical engineering. She experienced her first symptoms of Parkinson’s disease (PD) in 1984, when she was 13 years old and combines her engineering skills with her patient experiences to help herself and others with chronic diseases. Sara is currently pursuing a doctoral education at Radboud University Medical Centre, the Netherlands, in the area of self-tracking for PD. Sara was a WPC ambassador in 2013 and 2016 and co-chaired the Patients Advocates Committee for WPC 2019. She is also an advisor to the conference Stanford Medicine X and a member of the British Medical Journal’s Patient Panel.

Martin Taylor

Roland Weber

Roland Weber, BA is an Independent Employment Relations Consultant who advises companies on staff legal matters and other human resource related issues. Roland studied at the University of Johannesburg (formerly the Rand Afrikaans University) where he obtained an Honours Degree in Employment Relations and an Advanced Diploma in Labour Law. Before starting his own consultancy business, Roland spent twenty five years working for various large companies in different employment relations and human resource management positions. He has published articles for professional magazines and has been conferred numerous awards from employers and clients alike. He has also been a keynote speaker at a variety of events, such as the Namibian National Economic forum, the Edgars Management Development Programme and the Botswana Telecommunications Authority’s national stakeholder’s meeting. In 1998 Roland was diagnosed with early onset Parkinson’s disease. After living with the disease for more than 20 years, he now plans to become more involved in Parkinson’s advocacy work at both a local and international level. Although his diagnosis has had curtailed his keen interest in participating in sports, Roland still manages to get to his weekly biokenetic classes and loves walking with his family, which includes a very active border collie (when physically able). Roland is also involved with various charitable institutions under the ambit of his church (St Columbus, Parkview) and manages the church library. He is the father of three children and lives with his family in Johannesburg, South Africa.

Fred Woodleif

Fred Woodleif, DDS was born and raised in Richmond, Virginia.  After receiving a biology degree at The College of William and Mary, he completed his D.D.S. training at The Medical College of Virginia in 1976.  Most of his 33 year career was spent practicing family and cosmetic dentistry in a large multi-specialty group practice until his retirement in 2009.  He holds Fellowship and Mastership in the Academy of General Dentistry, a worldwide organization emphasizing continuing dental education.  He was an adjunct clinical professor for 10 years at the MCV/VCU School of Dentistry. Dr. Woodlief was diagnosed with Parkinson’s Disease at age 56.  Dr. Woodlief is a member of the Richmond Movers and Shakers.In 2016 he began what has become a yearly involvement with the PD SELF program (Self Efficacy Learning Forum out of Denver as the lead facilitator for this 9 month course for new PD patients.

BACK TO TOP

Powered by YourMembership  ::  Legal