Who We Are

START, DISCOVER, BUILD, GROW, JOIN, LEARN

Parkinson’s Resource Organization is dedicated to improving the quality of life for families and individuals affected by Parkinson’s disease by providing education, support, information, and referral services.

Our Mission: To work so that no one is isolated because of Parkinson’s disease

 

START finding the resources available to you by going to the Wellness Village.

DISCOVER how to use this website (COMING SOON).

DON'T SEE WHAT YOU WERE LOOKING FOR? HELP US BUILD AND GROW this site to what you want. Consider this your site by making a suggestion below.

JOIN one of the fastest growing Parkinson’s informational, educational and emotional support organizations in the Parkinson’s world. Click here to get in touch and stay in touch with email updates, the PRO Monthly Email Newsletter, and email reminders of Parkinson's related events and meetings in your area. It’s FREE.

LEARN about Parkinsonisms.

TIRED of having to find out what your doctor may not be telling you? Check out the information in the articles in PRO News.

 

PRO - The History of Parkinson’s Resource Organization

The concept of Parkinson’s Resource Organization came about on an airplane ride back from New Orleans, Louisiana where I attended a Parkinson’s symposium and came away with more questions than anyone seemed comfortable answering.

On the trip back to Los Angeles I had an epiphany that I shared with my seatmate, saying, “I know; we’ll call it 'Children of Parkinsonians,' our acronym will be COPS, and we’ll be out to arrest Parkinson’s." My seatmate had no idea what Parkinson’s was, and for that matter, in 1989 nor did I. I only knew my mother and my fiancé (who later became my husband) were both diagnosed with it.

I chose about 13 of my friends to join me in brainstorming sessions to determine if it was a good idea to start another Parkinson’s Organization.  There were five major ones at that time.  We had representatives from American Parkinson’s Disease Association and National Parkinson’s Foundation come to discuss with us why we might consider joining forces with them.  It was apparent that there could be no autonomy for us to build what we thought covering the needs of families affected by Parkinson’s were; we wanted a clear and unbiased mindset on how best to help people with Parkinson’s and/or their families.

In 1989-1990 there were many support groups but there were none that were for me. I was the adult child of a person living with Parkinson’s, and I was soon to become the spouse of a person with Parkinson’s. Where was I going to go to discuss my issues and concerns? This, we thought, would be our niche. We would advocate for, educate, emotionally support, and supply respite to the caregivers of people with Parkinson’s.

On December 17, 1990, we were incorporated, registered with the Internal Revenue Service as a 501(c)(3) non-profit charity, and registered with the Attorney General of the State of California.

By 1995, people with Parkinson’s were asking us if we could create meetings for them like the ones we had for our caregivers. They also were concerned because 1) they were not children, or 2) they didn't have children, or 3) their children were not interested, they were. At first we suggested that they work with the other organizations to get what they wanted; however, their persistence moved us forward to creating “educational” forums that were meetings opened to the people with Parkinson’s as well as the caregivers. We tried to keep the meetings centered on “Quality of Life” issues, family planning, and “Life” issues rather than bringing in drug representatives to discuss the latest in drugs available. We also stayed away from doctors speaking to the group unless they could discuss “Quality of Life” issues. With all of this, it was incumbent that we change the name of the organization. So we had a contest among our Newsworthy Notes Newsletter readers. Trudi Licht from Palm Desert won the name contest with Parkinson’s Resource Organization, and from Granada Hills, CA, won the contest for the logo, which is the sun burst that includes the words Hope, Encouragement, Support, Education and Inspiration.

Our focus remained around having Board and Advisory Board Members that were laypeople as well as professionals that practiced in areas that would inure to the benefits of everyday living with this disease.

  • Legal: Estate planning, long term care planning both in the way of insurance as well as the foundation for public subsidy, wills versus trusts, conservatorships, powers of attorney, powers of attorney for health care, planned giving, SSI and SSDI, and veterans' issues.
  • Insurance: Long-term care insurance–for the caregiver as the person diagnosed with Parkinson’s was no longer eligible, medical insurance including supplemental, life and disability insurance, and viatical settlements.
  • Financial Planning: CPAs, wealth managers, bankers, and trust officers.
  • Caregiving and Care Management: In-home service agencies, assisted living facilities, board and care facilities, skilled nursing facilities, independent living with a care menu, personalized referral services for care options, and geriatric care managers.
  • Medical Professionals: Using an integrative approach and specializing in movement disorders/neurology, vision, incontinence, nutrition, speech and swallowing, hearing, occupational therapy, physical therapy, chiropractic, and alternative medicine.
  • Hospice and End of Life: Hospice care, end of life care practitioners, mortuaries, crematoriums, and funeral homes.
  • Science: Brain and tissue banks, for donation of brain tissues and body parts for the development of better science and proof of disease diagnosis.

 

Now, instead of building a Board of Directors that practice in the areas that would inure to the benefits of everyday living with this disease, we’re building the Wellness Village.

Working so no one is isolated because of Parkinson’s and working to find choices in creating your ultimate quality of life.

 

Contact Us!

PRO Staff and Members of the Board

  • Jo Rosen
  • Chief Executive Officer

Jo Rosen

Chief Executive Officer

After her mother, then five years later, her future husband Alan were diagnosed with Parkinson’s, Jo Rosen began by seeking out experts and people that had been through similar experiences. She wanted to know what living with Parkinson’s meant for each of them. Jo began the journey by reaching out to all the major Parkinson’s Organizations. She found that fundraising is what they wanted because of her background owning a financial management firm. She also found these organizations were not equipped to recommend support groups for caregivers, alternatives to traditional medical care, or coping with a future facing chronic illness. She began searching for experts in life planning - financial planning - medical care - memory retention - and self-care. The week after her wedding in 1990, Jo decided that her efforts in organizing a major Parkinson’s organization’s symposium at UCLA, were not going to provide solutions to their needs. She felt that if this was missing for her, then it was likely that thousands of others were facing the same challenge. So, she started what is now the 501(c)(3), Parkinson’s Resource Organization (PRO). Jo has been on a 30-year mission to work so that no one is isolated because of Parkinson’s. Every resource in PRO’s network helps emotionally support and provide education to families affected by Parkinson’s, even if the family is made of one.
  • Lori Allen
  • Director of Marketing & Fund Development

Lori Allen

Director of Marketing & Fund Development

Recently joining Parkinson’s Resource Organization as the Director of Marketing and Fund Development, Lori Allen brings over 20 years of international brand marketing communications experience, strategic product development in financial technology, and a lifelong dedication for helping non-profit organizations thrive. Lori is committed to being a catalyst for change globally in the corporate world, for social impact, and the environment. She has served on the board of directors and held committee chair positions for many non-profit organizations, spearheaded employee volunteerism activities through corporate social responsibility and corporate philanthropy programs. In her passion of making a difference in people’s lives globally, Lori is highly skilled and valued as an Executive Coach for leadership and team development. Her educational background includes an MBA, executive business studies, and non-profit management certification through Stanford University and the Executive Education Programmes of INSEAD. Lori is fluent in Italian and has studied foreign languages, literature and art history at UCLA and Loyola in Chicago. She has worked and lived in major cities across Europe and the United States. We are happy that Lori has relocated to Palm Desert and is bringing to the PR Organization her expertise and desire to help others.
  • Jeremy Simon
  • Communications Director

Jeremy Simon

Communications Director

  • William Remery, Esq.
  • Secretary Treasurer

William Remery, Esq.

Secretary Treasurer

  • Curtis Cannon
  • Board Member at Large

Curtis Cannon

Board Member at Large

  • Kaya Kouvenon
  • Board Member at Large

Kaya Kouvenon

Board Member at Large

  • Matthew Lu
  • Board Member at Large

Matthew Lu

Board Member at Large

  • Michael Lu
  • Board Member at Large

Michael Lu

Board Member at Large

  • Susan Bartel
  • Support Group Facilitator

Susan Bartel

Support Group Facilitator

  • Susan DuBrin
  • Support Group Facilitator

Susan DuBrin

Support Group Facilitator

  • Barbara English
  • Support Group Facilitator

Barbara English

Support Group Facilitator

  • Martha Hanson
  • Support Group Facilitator

Martha Hanson

Support Group Facilitator

  • John Mason
  • Support Group Facilitator

John Mason

Support Group Facilitator

  • Peggy Sexton
  • Support Group Facilitator

Peggy Sexton

Support Group Facilitator

  • Linda Borlaug
  • Extraordinary Volunteer

Linda Borlaug

Extraordinary Volunteer

  • Cheryl Ewoldt
  • Extraordinary Volunteer

Cheryl Ewoldt

Extraordinary Volunteer

  • Sheila Heffernan
  • Extraordinary Volunteer

Sheila Heffernan

Extraordinary Volunteer

  • Hannah Kyllo
  • Extraordinary Volunteer

Hannah Kyllo

Extraordinary Volunteer

  • Gary Lopez
  • Extraordinary Volunteer

Gary Lopez

Extraordinary Volunteer

Contact Us

Physical Address
Parkinson's Resource Organization
74090 El Paseo #104
Palm Desert, CA 92260

Local Phone
(760) 773-5628

Toll-Free Phone
(877) 775-4111

General Information
info@parkinsonsresource.org

 

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Updated: August 16, 2017