WPC 2016 Ambassadors
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Ambassadors are members of the Parkinson's community, all of them live with PD, who are passionate about the WPC and believe it's the right format of a meeting to generate the collaborations and momentum needed to find a cure, improve models of care, and make sure the world knows about the WPC 2016. They are leaders in their communities on the ground and online and look forward to welcoming delegates to Portland in 2016. 
 

Invite an Ambassador to speak to your group about the WPC 2016. They can join you in person or via Skype. WPC Ambassadors have all attended at least one World Parkinson Congress and can give you the details you need and inspire you to make it to Portland in September 2016. Learn more by writing to christiana@worldpdcoalition.org.



 


Fulvio Capitanio (Spain) is an economist and ITC manager. He was diagnosed with Parkinson's in 2007 and retired from his job in 2009. In January of 2008, with a group of PD friends he met over the Internet, he started an online organization called "Unidos contra el Parkinson” (together against Parkinson's disease) at http://portal.unidoscontraelparkinson.com.

In October 2009 Fulvio coordinated the group's Second International Meeting in Spain dedicated to promote the importance of complementary therapies in PD treatment.  In March 2010 Unidos contra el Parkinson edited a comic "Through the eyes of a child” to help parents to explain PD to their children (translated into 8 languages and available here).

In April 2010 started the project "Run for Parkinson’s”, a worldwide event involving more than 100 cities from 12 different countries to run and walk miles to raise awareness on PD http://run4parkinson.org/. Fulvio is now dedicated to help and assess young onset people with PD. 

The Spanish Neurology Society has decided to award with the SEN 2015 prize Fulvio Capitanio and his work with the platform Unidos contra el Parkinson in recognition of the efforts to improve the quality of care of patients with Parkinson's disease and support research through the promotion of actions promoting citizens participation, social information and solidarity with those affected and their families.

Fulvio was also an Ambassador for the WPC 2013.

Click here to watch Fulvio take the Pies for Parkinson's challenge!


Jillian Carson (Canada) was diagnosed with Parkinson in 2009 at the age of 49. Her symptoms began after a neck injury with spinal cord damage. Once the neck was fused, she noticed a tremor and cramping in her right arm. Up until this time Jillian led a very active life, which included working as a self employed physiotherapist for 25 years. She knew too well the symptoms of Parkinson and it's devastating effects on those who live with the neurodegenerative disease.

Exercise is her specialty and Jillian was not going to allow her diagnosis to stop promoting exercise and wellness.


Jillian retired from her job in 2011 and trained with Dr. Becky Farley a neuroscientist and physiotherapist. Jillian became a trained Parkinson's Wellness Recovery/Exercise for Brain Change, clinician. She continues to use her physiotherapy skills volunteering and exercising in her local Parkinson community in Victoria BC, Canada. Her emphasis is on living well with Parkinson through Parkinson specific exercises.

Jillian is a Parkinson's Movement Ambassador and is a strong advocate for better quality of life for people living with Parkinson's around the world. Her video, A Physiotherapist's Journey with Parkinson's, was shown at the opening ceremony WPC 2013 in Montreal.

Watch Jillian take the Pies for Parkinson's Challenge!


Carey Christensen (USA) is a patient activist, writer and speaker. Diagnosed with Parkinson's disease in 1999 at age 41, she turned to advocacy in 2002 after losing her job due to the little understood non-motor symptoms of PD.

As a voice for everyday patients struggling to maintain relationships, keep jobs, or get by on Social Security disability, Carey is motivated by her belief in the power of patient partnerships with researchers, doctors and the Parkinson’s community to help better understand, treat, cure, care and live well with PD. In addition to acting as a WPC 2016 Ambassador for the World Parkinson Coalition, she volunteers for the Michael J. Fox Foundation, the Parkinson's Action Network, the Northwest Parkinson's Foundation, and the Parkinson's Disease Foundation, working to raise awareness and provide insight as Parkinson's disease is redefined.

Carey is currently collaborating with her doctors, Monique Giroux, MD, and Sierra Farris, PA-C, at the Booth Gardner Parkinson's Care Center in Kirkland, Washington, to develop a wellness program that will help patients remain active. She lives near Seattle.


Andrew Curran (Ireland) was diagnosed with Parkinson’s in June 2008, at the ripe old age of 29. Although he struggled with the effects of this long-term condition, he was adamant that Parkinson’s wasn’t going to affect the life he lived and continued to follow his passion for traveling. In 2010, he spent eight months circumnavigating the world by land and sea. However, having moved to Taiwan in 2011, he was forced to return to Ireland within six months to get help as he found that he couldn’t continue coping with Parkinson’s.

For the first time since his diagnosis, he opened up and spoke to other People with Parkinson’s and found much-needed mutual understanding and support. He became involved with Move4Parkinson’s, an Irish charity that aims to help People with Parkinson’s improve their quality of life. Since then, he has made positive changes in his life by exercising and practicing mindfulness on a regular basis. Realising and feeling the benefits of healthy eating, he has also become passionate about nutrition and the affect that food has on his body. Through his own experiences, he has learned that the self-management of Parkinson’s alongside his medication is a very important part of living with the condition. Today, he follows the motto "Life is what you make of it and not what you let it become”, and hopes to show and encourage others that it is possible to live well with Parkinson’s.

Click here to watch Andrew tell you about his experience at the WPC 2013 and why he wants YOU to join the worldwide community & attend the WPC 2016!


Kevin Krejci (USA) manages market research and business alliances for Fujitsu Laboratories. He is based in San Francisco, where he works closely with technology researchers and startup entrepreneurs in a variety of areas related to ICT (information and communication technologies). He has long been passionate about "open innovation" and Silicon Valley entrepreneurial culture, and connecting the local venture community with Japan. He has a deep belief in the democratization of innovation, and the power of ordinary people and tech working together to have a positive impact on society, health and the environment.

He was diagnosed with PD in 2013, and shortly thereafter joined WPC 2013, a very cathartic and wonderful experience that left him very motivated to work with people and tech to find new ways to optimize life with PD, and find a cure. He is a proud husband and father of two boys, and describes himself as "An impatient PD patient, outsmarting Parkinson's with tech, data, exercise, organic unprocessed food, and positive visualization."

Click here to watch Kevin take the Pies for Parkinson's Challenge!



Samuel Ng (Malaysia) is the President and Co- Founder of the Perak Parkinson’s Association (PPA) – a voluntary organization established in 2012 by a group of Person with Parkinson’s, their caregivers, family members and friends.

Samuel‘s on-going personal battle with Parkinson’s since he was 42 (in 2007), which resulted and up-to- date help, healing, hope and a healthy attitude to face the disease with pride and perseverance. Part of his pursuit involves traveling far and wide to share his experience and to gain expertise in Parkinson’s Disease. 





Dilys Parker (New Zealand) was diagnosed with Parkinson's in May 2008. Early in 2007, Dilys with her husband John left her home and adult children in New Zealand and set off on an adventure to Europe. She and John established a new life in the UK and lived and worked in London. Diagnosed barely a year later Dilys' travels and socializing now took on a different focus and included meeting others with Parkinson's from around Britain and Europe.

Dilys has been involved in the setting up of two London based support groups for younger people with Parkinson's. She is an Ambassador for Parkinson's Movement, a contributor to webinars and On The Move Magazine and is now active in Parkinson's New Zealand.

Dilys has a nursing and social service background including community based nursing, nursing education, counseling, social service management and community development. She is committed to raising the profile of the WPC within her own country and is also keen to see an increased awareness of the place of smaller countries within the wider Parkinson community. Dilys returned to New Zealand in May 2013.

Read Dilys' article in the Kai Tiaki New Zealand Journal published in December 2014*.


Sara Riggare (Sweden) was in her early teens in the mid 1980’s when she realized that her body did not always function as others’. She was diagnosed with PD in 2003, at the age of 32 and is living in Stockholm with her husband and daughter. She has been working as a chemical engineer with environmental issues for 14 years but is now a health informatician, using ICT to improve healthcare and medical research.

Sara is involved with PD issues both in Sweden and internationally and wants to increase awareness about young-onset PD and is dedicated to patient education and bringing PWP and their families closer to healthcare professionals and researchers.

Sara was also an Ambassador for the WPC 2013.

 

 

Sara calls herself “selfcare expert” and has been exploring the use of observations and technology to better understand and manage her Parkinson’s, see links below.
-
Having Parkinson's since I was 13 has made me an expert in self-care
- Patients Doing It for Themselves
- PD Bootcamp Video

- Patients organize and train doctors to provide better care

Click here to watch Sara take the Pies for Parkinson's Challenge!



Israel Robledo (USA) was diagnosed with Parkinson’s Disease in 2007 at age 42. Soon after coming to terms with his diagnosis, he became involved as an advocate for increased clinical trial participation and health-related quality of life issues related to Parkinson’s Disease.

He currently serves as PAN Texas State Director and is a member of the Board of Directors for the Parkinson’s Action Network, the Executive Council for Parkinson’s Movement, an initiative of the Cure Parkinson’s Trust in England, an Integration Panel member for the Congressionally Directed Medical Research Programs (Neurotoxin Exposure Program for Parkinson’s Research), and a member of the Editorial Board for the Journal of Parkinson’s Disease.

Israel also serves in an advisory/support capacity for the Parkinson’s Disease Foundation as a Research Advocate, the Michael J. Fox Foundation for Parkinson’s Research as a Fox Trial Finder Ambassador and a Partners in Parkinson’s Ambassador, and as an Ambassador for the fourth World Parkinson Congress, and the Patient-Centered Outcomes Research Institute.

Israel has been recognized for his work for the patient community by the Parkinson’s Action Network with the Murray Charters Award for Outstanding Service to the Parkinson’s Community, as well as The Milly Kondracke Award for Outstanding Advocacy.

Most recently, Israel served as Co-chair of the Program Committee and Chair of the Advocacy and Government Committee for the third World Parkinson Congress held in Montreal, Canada, in 2013.

Israel works as a special education teacher in Midland, Texas, where he lives with his wife, Chris. His family includes three daughters, Amber, Ashley, Alisha, and grandchildren Landon Blake and Harper Grace.

Israel was also an Ambassador for the WPC 2013.




Allison Smith (USA) was 32 years old when she was diagnosed with Parkinson’s disease. After three years of hiding the symptoms of her illness, she decided to undergo deep brain stimulation surgery. With the support of her medical team, she has decided to take this challenge and give back to patients who struggle with neurological deficiencies. In 2010, Allison launched a program called "Parkinson’s in Balance” which offers fitness classes, support groups and community events at no cost.

Allison holds a Master’s degree in Marital and Family Therapy with an emphasis on Health and Fitness. She is a clinical member of the California Association of Marriage and Family Therapists (CAMFT). Allison is a personal trainer certified through National Academy of Sports Medicine (NASM), holding certifications in Sports Performance and Corrective exercise. Allison is also the author of "I am not Contagious” which documents her life with a chronic illness and has a online blog, "The PerkyParkie”.

Click here to watch Allison take the Pies for Parkinson's challenge!

Listen to Allison's interview on BYU Radio's The Kim Power Stilson Show. 


Ryan Tripp (Canada) was diagnosed with Parkinson's disease in July of 1996, at an age of 47 years old. He worked as a P.E. teacher and administrator for 23 years. Three year's later he was forced to take a long-term disability health leave from his profession. This lead to a major slip into depression, a fractured marriage and a stage of 'who am I and what is happening to me?!?'


After joining a PD support group, improved medication and some valuable counseling, he found a renewed focus on life and living with Parkinson's. His strong family ties to his 2 sons and 4 grandchildren plus active involvement in volunteer community events lead him to a new road in quest of
meaningful daily goals outside of Parkinson Society Canada. This provided him with fun, laughter, contacts, a wealth of information, and experiences that are extensive and invaluable. Finally inside P.S.C., he has been a strong consistent fundraiser, an enthusiastic advocate in the community, on Parliament Hill and at Queen's Park in Canada, plus he started, led and is now a member and liaison with  the local support group in South Muskoka, Ontario.

Ryan has attended the past 3 WPC's. He was part of the 1st Global Ambassadors Team for 2013 and has accepted a 2nd term as one of the WPC 2016 A-Team in Portland, Or. USA. He continues to share information on "living alone with Parkinson's' and the need for a "team of support" in the community, to successfully survive. He states that adaptations are required for record keeping and learning new technologies are paramount in monitoring changes for himself and his Movement Disorder Specialist. The patient and the caregiver must be part of the process in achieving a meaningful solutions to problems and the ultimate "cure!"

His personal code encompasses; to live with intention, walk to the edge, listen hard, practice wellness, play with abandon, laugh, choose, with no regret, continue to learn, appreciate your friends, do what you love, and, live as if this is all there is.

Let's be positive and united in our attack on Parkinson's Disease by changing the "I" in illness to "W" and make it wellness! "Carpe Diem!"


Click here to watch Ryan take the Pies for Parkinson's Challenge!

 

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