Meet the WPC 2022 Parkinson Ambassadors

The WPC 2022 Ambassadors were selected from a highly competitive pool of applicants who all live with Parkinson’s. Combined they’ve been living with Parkinson’s for 101 years making them experts on a disease that is often misunderstood and complex to diagnose and can be challenging to live with.

They are experts on living with Parkinson’s, because they live with it 24/7. They have all attended at least one past World Parkinson Congress and found the WPC experience to be life changing.

Ambassadors will work as part of our outreach team as we plan for the WPC 2022 in Barcelona, Spain from June 7 – 10, 2022. Whether giving talks at local support groups, writing articles in papers or on blogs, making themselves available to speak about the WPC to communities wanting to learn more about why to attend a World Parkinson Congress, they are invaluable members of the WPC team and we are thrilled to have them on board. Follow them on social media, read their blogs, and invite them to present to your group.  They are eager to tell you more about the WPC and why you should plan to be in Barcelona.



Supernus
(formerly US WorldMeds) is the proud sponsor of the WPC Parkinson Ambassadors


Alison

Alison Anderson (UK): I have enjoyed a nursing and healthcare management career spanning over 30 years. My husband and I have three grown up boys and family time is very important to me.

Diagnosed with Parkinson's 5 years ago, I have since taken up cycling and love the freedom, friends, adventure and sense of well-being this brings me. This helps me to strive to live as well as I possibly can with PD. Understanding both the PwP and the healthcare provider perspective can be helpful and interesting at times!

Twitter: @alisoncyclopath
BLOG:
Ramblings of a Cyclopath

Alejandra Borunda

Alejandra Borunda (US/Mexico): Alejandra was diagnosed with young onset Parkinson's at the age of 28 and is currently 33, living with PD for five years at this point. She works in social services with the homeless population helping them get the services they need such as housing.

Alejandra recently got married and has two dogs. Since her diagnosis she  has been advocating for the Parkinson's community, both the English speaking and Spanish speaking communities. 

Her role as an Ambassador is quite personal. Parkinson's is genetic for Alejandra since she has the PARK2 gene and 8 family members on her paternal side of her family who have or had Parkinson's.

                                       Facebook: Alejandra Aguilar Borunda

Miriam Bram

Miriam A. Bram (US): During her 15 years in the public relations field, she generated publicity for public and private companies. She advised CEOs on media relations and strategic communications plans. After her career in PR, Miriam attended The Institute for Integrative Nutrition, where she became certified as a Holistic Health Counselor. Miriam was diagnosed with Parkinson's Disease in 2008 at the age of 45. She is committed to raising awareness of Parkinson's Disease to further progress in finding a cure and to give a voice to the young onset PD community. Miriam lives in Manhattan with her husband and two daughters.

Twitter: @miriambramBram

Miriam Bram Geoff Constable, C.Eng Naval Architecture. RPEQ (Australia) :

Goeff is a Naval Architect, but now work in the design teams for major infrastructure projects across Australia and also globally. Outside of work, my passion is all things Parkinson's and I have developed a strong team network to get things done. I would encourage people to go to the WPC because, in simple terms ...you are going to meet a huge collective of very diverse people with Parkinson's all with very important stories and experiences to share and best of all they will be interested in you. If you want to light up your activist side, learn how to raise more awareness, live a better life, feel connected ... then this is the place to be.

Facebook: Geoff Constable

Rui Couto Rui Couto (Portugal): With more than 20 years of experience in SAP Consulting, the largest business information systems software. Facing challenging and complex project across many industries and service provider companies. Researching and developing with cutting edge technology and managing in several countries, meeting amazing people and cultures. In 2012 at 38 years old, life presented me with the a new challenge, and I had to make this decision, It was not easy and I’m still struggling to keep it alive every single day.

It is Optimism, It's more than a decision, it's a way of life. Because every single moment you make a decision to take a path and it's your own. That's one thing that is truly yours and that's part of what makes your identity. The disease doesn't make you, what you are it's just a condition.

Once a friend of mine, said: “he's not slow, he's fake slow... because he moves slowly... but things get done.”

I think we all feel this way, at one time or another, I feel like a millennium in my brain but my body does not reflect that speed, so with the support of my background and the amazing people that I was lucky to meet, I research and develop strategies to solve everyday solutions to be more productive.

I often go to meet-ups and congresses to connect with people, that can help with their technology and knowledge and share awareness for Parkinson's. I would tell someone who is unsure about attending WPC conference: Give yourself a chance to feel new energy, hope and optimism. Those are the necessary tools to keep your dreams alive."

Twitter: @ruicouto

Sandra Elms

Sandra Elms (Australia): My background is in Education. I was a Biology/ Science teacher in London UK for 17 years. Prior to that I was involved in medical research at University College London. When I came to Australia I taught at a Private Girls school in Sydney, Science and HSC Biology. I was also a year coordinator and looked after a year group from year 7 to year 12. I also ran the Social Justice group at the school which involved fund raising, event planning which included a special Closing the Gap event to raise awareness of Indigenous health issues.

I would like to encourage and interest more people to attend the WPC. I believe it is a unique event because of the way it is run and presented. Unlike many conferences which discuss Parkinson’s disease, but do not encourage people with Parkinson’s to attend, the WPC is open to everyone. You can go to any lecture or event on offer. There are many people with Parkinson’s who have an academic background and would welcome the opportunity to listen to current research. Where else can you have the opportunity to sit at a Round Table with a prominent scientists/ researchers and have a genuine dialogue. Where else will you meet people from all over the world who are doing so much to improve the lives of people with Parkinson’s, where else are you able to meet people with the disease from all over the world and see how they are coping with their symptoms. I have been privileged to be able to go twice to WPC and would strongly encourage others to go.

Facebook: Sandra Elms

Richelle Flanagan

Richelle Flanagan RD, BA, MSc, PgCert (Ireland): For the past 14 years Richelle has worked as a registered dietitian. Her dietetic experience included hospital dietetics followed by private practice providing clinics for a diverse range of clients, NGOs, and corporate wellness clients. She is a past president of the Irish Nutrition & Dietetic Institute which is the professional body for dietitians in Ireland and was made an honorary member for her work for the organization. She is currently on the board of the Coeliac Society of Ireland, having being diagnosed with coeliac disease 8 years ago. She is currently the chair of their clinical advisory committee.

Richelle was diagnosed with YOPD 2.5 years ago and subsequently attended the WPC congress in Kyoto due to her interest in research for PD that would benefit her own health and that of her PD colleagues in Ireland. She is a member of the WPC YOPD group raising money through a Facebook campaign to raise funds to send people to WPC Barcelona. She is currently secretary of the Dublin branch of the Parkinson's Association of Ireland and also a member of Young Parkinson's Ireland. She believes in advocating for better MDT and specifically nutrition services for people with Parkinson's.

Twitter: @RichelleFlan

Larry Gifford

Larry Gifford (Canada): Larry is the National Director of Talk Radio for Corus Entertainment in Canada, has spent 30 years in radio as a reporter, anchor, host and manager.

Gifford was diagnosed with Young Onset Parkinson's Disease in August 2017. In September 2018, he launched the podcast "When Life Gives You Parkinson's" which details his journey with the disease as a guy in his mid-40s with a family and a career.

Gifford is a board member of the Pacific Parkinson's Research Institute, The CKNW Kids' Fund and serves as a member of the Michael J. Fox Foundation Patient Council.

                                        Twitter: @giffordtweet

Christine Jeyachandran, BEc(SocSc), GDDiv, MDevS (Peru): Almost 6 years ago at age 37, Christine was diagnosed with Parkinson's disease. It started with a slight tremble, weak fingers and lead to left foot dragging and difficulty walking without medication. The first few years flew by and she suddenly realized that she couldn’t raise her arms and this lead her to do something drastic! She lives in Peru where there are no PD classes nor PD physios so she choose a coach she trusted who happened to be her daughters gymnastics coach. Gymnastics has changed her life completely and empowered her physically and mentally. Her video Handstand for Parkinson’s was a finalist at the World Parkinson Congress. She regained range of movement, balance, flexibility, coordination and she's stronger than ever. And the latest update shows how hard it is but she is persevering: Christine's Gymnastics Update. Now she is passionately helping educate PWP and encouraging them to exercise, especially in Peru as they have very limited services and patient education.

Twitter: @christinejeya
Heather Kennedy

Heather Kennedy (US): Writing under the alias of Kathleen Kiddo, Heather is the founder of advocacy site, www.kathleenkiddo.com, offering resources and connection through social media.

An entertaining speaker known for her unique talks and film presentations about living with Parkinson’s. Heather Kennedy is on a mission to share her reality of life as a women with Young Onset Parkinson’s Disease. A diagnoses at 40 yo turned her life upside down. Her talents as a writer and performer have allowed her to package her experience for readers and audiences to glimpse the dark, light, awkward, funny, inspiring, flips, dips and turns of her journey. Since her diagnosis in 2011, she has collaborated with organizations such as the Davis Phinney Foundation, Parkinson’s Life, EPDA, Parkinson’s Foundation, Shaky Radio, APDA, The Cure Parkinson's Trust, and the World Parkinson Coalition.

By January of 2021, Heather expects to release two books, one on how to approach grief and a vivid collection of short stories.

Twitter: @kathleenkiddo
BLOG:
Kathleen Kiddo

Jon Pawelkop

Jon Pawelkop (US): When he was 56 years old, he first noticed a tremor. A neurologist told him it was essential tremor. Two years later, he found out it was more. Jon knew he needed to stay active and find a way to share hope with others, and that in itself would become an integral part of his journey to living well with Parkinson’s.

Fortunately for him, active was the definition of the way he had always lived. Jon loves biking, swimming, boxing, hiking and adventure travel. He has completed numerous triathlons, mud and obstacle course races. His two Half Iron Man’s races together make him a quasi-Iron Man.

Jon doubled down on his exercise routines and began to carve a role for himself in the PD community as a Wellness Advocate. He created his personal challenge goal, Jon’s Boxing Grand Tour Fighting Parkinson’s, with a mission to visit and speak to Parkinson’s Fighters in all 50 states, a goal he accomplished in a mere 13 months. He continues to share his message both in the US and abroad, bringing hope and resolve to people with PD.

Twitter: @JonP_MIMS

Werner Remmele (UK): I graduated from the Technical University of Munich (TUM) with a degree in Mathematics and Computer Science. Throughout my professional life I have been responsible for different research departments at Siemens AG, e.g. computer languages, artificial intelligence, machine learning. Later I held responsibilities in communications and innovation management. As member of the company's senior management team I had to represent the company in public.  

I applied to be an ambassador because the WPC is the ultimate place for anyone interested in Parkinson's, being a patient, carer, healthcare professional, researcher or just wanting to get answers. The scope and program of the WPC enables an individually tailored experience of the congress. Whatever the reasons for being interested in Parkinson's, level of knowledge and understanding may be the WPC is the place where every information is available.

Twitter:
@wremmele

Shanthipriya Siva

Shanthipriya Siva, MD (India): A consultant ophthalmologist, a self taught artist, founder of SAAR Foundation and YOPD warrior for 9.5 years. Her mission in life is not to just survive, but to thrive and to do so with some compassion humor and style. Battling PD past 9 yrs she realized a lot of challenges faced by people in India. In this context she started her foundation with the tag line "shake off and move on" to make a difference in the life of a person with Parkinson's. Just like the metaphor when the caterpillar thought it was the end of the world she turned into a butterfly.

Twitter: @foundation_saar
Website: www.saar-foundation.org

 

Omotola Thomas

Omotola Thomas, MSc (UK/Nigeria): I am a self-proclaimed 'Reckless Optimist', which means I strive to see the best in every situation. I like to write and I try to use my writing to tell compelling stories. I am not a professional videographer, but I have taught myself to use that medium, in a creative and engaging way, to tell compelling stories as well. I like to speak, and have spoken at different events, including the 2019 WPC in Kyoto. I have a BSc. in Systems Engineering, and an MSc. in Project Management.

I would tell people who are unsure about attending the WPC that the gathering of all PD stakeholders under one roof, and the atmosphere that is created as a result, is a remarkable experience that everyone connected to or affected by PD should experience. There is ample opportunity to gain knowledge from, and connect/network with so many different people in the PD community, from across the globe, and the significance of the latter is not to be understated. I would also tell them that my experience in Kyoto was not only informative, it was also fun.

Twitter: @omotolathomas8
BLOG:
ParkinStand

A.C. Woolnough

A.C. Woolnough (US): A.C. worked as an English teacher and high school principal in California, Idaho and Alaska for 37 years. Shortly after retiring, he was diagnosed with PD--making him a second generation PWP. He became involved with the Parkinson's Foundation as a member of their People with Parkinson's Advisory Council and as a Research Advocate. He has participated in more than 25 research studies and projects. In addition to writing a monthly magazine column, his book, On Fire, was published in time for the 5th WPC in Kyoto, Japan. A.C. has presented at numerous conferences including the WPC 2019 in Kyoto. He stays involved with political advocacy, leading a support group, and as a member of the OHSU patient advisory council in Portland, Oregon.

                                       Facebook: A.C. Woolnough

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