'Finding Our Power Claiming Our Place'

A Conference for Adults with Cerebral Palsy

Brought to you by the CP Group, made possible in part by a CP Awareness Grant from Janet, Jenner & Suggs, LLC and Cerebral Palsy Magazine

 

“Life and Times with Cerebral Palsy.”

CONFERENCE SCHEDULE

OCTOBER 19- 22, 2007

DoubleTree Hotel, Crystal City, Virginia

 

 

 

FRIDAY, OCT. 19

 

3:00 PM - 6:00 PM --- REGISTRATION - TIRED FROM A LONG TRIP? REFRESH YOURSELF WITH A MASSAGE!

Many conference attendees will arrive at the DoubleTree Hotel after a long and arduous trip. You can banish your fatigue by enjoying a relaxing massage at the hotel. The massage is free and will help put attendees in a positive frame of mind as they begin the conference.  You will be able to sign up for your massage at a registration table in the lobby. The time available for massage is limited, so be sure to register as soon as you reach the lobby.
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DINNER --- ON YOUR OWN -  There are restaurants in and around the DoubleTree, and attendees will be able to find one that satisfies their taste buds and their budgets.
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7:00 – 9:30 PM --- RECEPTION FOR CONFERENCE PARTICIPANTS AND FRIENDS - The conference will open with a reception for conference participants and friends. The reception provides an informal and relaxed atmosphere to meet new friends and renew old acquaintances. Complimentary hors d'oeuvres will be served and bar service will be available.

SATURDAY, OCT 20 

 

8:00 – 9:00 AM   CONTINENTAL BREAKFAST

 

9:00 -10:00 AM   - KEYNOTE ADDRESS – DR. DARRELL  PONE   Dr. Pone, born with cerebral palsy, has practiced medicine as a Board Certified Medical Doctor for more than 20 years.  His specialty is phy which he chose because he felt that his CP would help him better relate to the majority of his patients who also have a physical disability.  Dr. Pone has received numerous awards from medical, civic and religious organizations.  Dr. Pone will reflect on the challenges presented by CP and the means he used to overcome these challenges. 

 

10:00 AM – 11:00 AM   IF “I ONLY HAD A JOB.,”   Arundelton Consulting was established in January of 2006 by Richard Barnard following his retirement as Senior Vice President of Melwood Corporation after a 37 year career. Melwood is a non-profit Community Rehabilitation Program serving individuals with developmental disabilities. From the beginning, Melwood had the basic philosophy that in order to provide the best and most advanced rehabilitative services it had to operate as a business. To that extent Mr. Barnard planned and implemented a very aggressive business model that took the company from a single revenue source in the early sixties to a $70M corporation with multiple revenues streams serving over 2000 individuals.

 

Mr. Barnard has been working on behalf of the non-profit community his entire career with special emphases on education and training, business planning and development, Social Entrepreneurship (alternative revenue streams), fund development and federal contracting. Using his knowledge of the nonprofit community along with years in business development and operations he assists non-profits in realizing future sustainability by increasing unrestrictive revenues through business ventures.

 

12:00 NOON – 1:30 PM --- LUNCH

 

2:00 – 3:30 PM   THE FELDENKRAIS METHOD

 

The Feldenkrais Method (and its evolution in the Anat Baniel Method) consists of individual or group lessons to improve thinking, feeling, moving, and sensing in any direction with equal ease and comfort.  Any client (including those with cerebral palsy) can anticipate experiencing noticeable differences after every individual or group lesson such as --

-reduced pain or discomfort in back, neck, or joints of the arms and legs
-increased flexibility
-improved coordination
-expanded vitality, well-being, creativity, and/or problem solving
-clearer self image
-easier breathing, speaking, and/or decreased drooling.
Practitioners use gentle touch, movement, and/or words to create focused learning conditions and direct the attention of the learner. 
More information is available at www.feldenkrais.com and
www.anatbanielmethod.com.
Presenter – Carla Oswald Reed
 
4:00 PM– 5:30 PM EXERCISE - ARE WE HAVING FUN YET?

 

In spite of advances in medical care and technology, physical activity, including exercise, is still a key ingredient to a healthy lifestyle.  But for many people, exercise is laborious and boring.  This session features two therapists/athletes who have taught sports and physical activities in a variety of settings, the session will show how to become more physically active.  An overview of community programs that provide adaptive physical activities will be provided and demonstrations of wheelchair sports will be offered. 

PRESENTERS- Brenda Gilmore, Joan Joyce

 

DINNER –6 PM THE DINNER IS IN THE HOTEL AND IS INCLUDED IN YOUR CONFERENCE FEE.

 

8:00 PM -- SOCIAL WITH DJ

 

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SUNDAY 0CT 21

 

8:00 – 9:00 AM   CONTINENTAL BREAKFAST

 

9:00 AM - 11 AM  AGING AND CP --  Early aging in adults with CP has been the subject of a number of reports in recent years, but less attention has been paid to ways that can help alleviate this problem.  A panel of health care professionals and adults with CP will discuss the options available to adults, including alternative medicines.

12 NOON – 1:30 PM LUNCH

 

2 – 3:30 PM DISABILITY CULTURE 

“Disability Culture – What’s the Purpose?” is the title of a paper by Carol Marfisi, a member of The Institute on Disabilities at Temple University and a member of this panel. As viewed by Ms. Marfisi and others, disability culture serves a number of purposes, one of which is to promote stronger ties between people with disabilities and the community at large.  Disability culture, however, can provoke controversy even among some disabled people who object to being linked with other disabled persons, as well as among nondisabled people who profess to see no similarities between themselves and disabled persons. 

Presenters – Carol Marfisi, Robert Watson

 

4 – 5:30 PM GENDER ISSUES - This was one of last year's most popular discussions, and consists of two concurrent sessions, one for men, one for women. Although the fears and joys of finding an intimate partner/significant other (or simply a best friend) occupied a significant portion of the discussion, other topics (how do I tell my mother I want to stop relying on her and hire a PCA?) were also discussed. The workshop has no fixed agenda; participants choose the topics they wish to discuss.
Co-presenters - Robert Watson and Linda Mahler

8 – 9:00 PM    WHAT LIES AHEAD FOR CP GROUP - The decision to move the 2008 conference from Washington to another city is but one indication of the growth of the CP Group.  Membership has surged from less than 30 in 2004 to more than 100 in 2007; a number of research studies have based their findings on surveys of members, and The Group has counseled people who discovered the organization on the web.  But growth has brought problems.  A larger organization requires better management than currently exists.  The Group needs to develop an outreach program for those adults whose disability and/or financial resources prevent them from attending conferences.  The experience and knowledge of members can be a valuable resource for mentoring program, but little progress has been made in this area.  These and initiatives that The Group is now in a position to undertake will be discussed at this session.  Presenter – Beth Mattfeld.

 

OCTOBER 22 MONDAY

 

8 AM – 9 AM CONTINENTAL BREAKFAST

9 AM – 10 AM COMPLEMENTARY AND ALTERNATIVE MEDICINE    Complementary and alternative medicine (CAM) is the term for medical products and practices that are not part of standard care. Standard care is what medical doctors, doctors of osteopathy and allied health professionals, such as registered nurses and physical therapists, practice. Alternative medicine means treatments that you use instead of standard ones. Complementary medicine means nonstandard treatments that you use along with standard ones. Examples of CAM therapies are acupuncture and herbal medicines.

The claims that CAM treatment providers make about their benefits can sound promising. However, researchers do not know how safe many CAM treatments are or how well they work. Studies are underway to determine the safety and usefulness of many CAM practices.

Presenter – Dina Dror

10:00 - 10:30 AM CHECK OUT

 

11 – NOON   CREATING NEXT YEAR’S CONFERENCE

Planning next year’s conference begins as soon as the current conference is completed.  Selecting topics for discussion next year is a major task.  If you would like to lead a discussion group at next year’s conference, now is the time to talk to the conference committee about your ideas.  And if you want to get involved in working on the conference committee, there’s a lot of work to do, including finding speakers and presenters, dealing with the logistics of bringing a large number of people to the conference site, finding ways to finance the conference, publicizing the conference and building outreach programs to contact adults with CP that haven’t heard about the conference.  The CP Group needs your help, so plan on attending this important session.

Presenter – Richard Bernard  

This year’s conference was made possible in part by a CP Awareness Grant from the law firm of Janet, Jenner & Suggs, Baltimore. MD, and by a grant from Cerebral Palsy Magazine.

WWW.CEREBRALPALSYMAGAZINE.COM

 
NOTE- The agenda is subject to change

 

 

 

 

 

BIOGRAPHIES

 

RICHARD BARNARD is on the Board of Directors of Hope House, as treasurer, an alcohol and drug addiction recovery program in Ann Arundel County, A partner in the Access Group Inc., educating the business community on the non traditional workforce and is the Chairman of the Baltimore Washington Corridor Chamber of Commerce.

 

DINA DRLOR: BA in Psychology, California State University, Northridge, (CSUN) 2004, advocate for alternative therapies for CP. I've lived in California most of my life, and spent 9 years overseas in Israel. I am constantly researching and trying the therapies out there for living with CP. I've personally done many of them over the years.

 

BRENDA GILMORE currently serves as the coordinator for the Blaze Sports Club of Washington DC.    She is a former nationally ranked wheelchair tennis player, and was the first African American female to achieve this status, holding a top ten national ranking for 5 consecutive years.  Brenda is a certified tennis instructor and teaches both able bodied and physically challenged students. 

 

She also volunteers for the RRTC at National Rehabilitation Hospital as a Spinal Cord Injury Consultant.  In that capacity Brenda helps facilitate workshops that offer first hand information to health care providers on the real needs of disabled patients.  

 

JOAN JOYCE, CTRS, MS

Joan Joyce is the recreation therapy coordinator at National Rehabilitation Hospital and the Director of Blaze Sports Club, Washington, DC.  Joan has worked as a recreation therapist in a variety of settings for over 20 years.  Joan has an MS in Recreation Administration from the University of North Carolina.

 

LINDA MAHLER - Linda has been a disability rights advocate since 1979.  She earned her law degree in 1986 and worked at the Maryland Disability Law Center representing adults and children with CP. She left the practice of law in 1994 and spent the next 9 years directing ILH, Inc., a non-profit organization that provides housing and support services to adults with disabilities. She is embarking on a new career in disability as a special education teacher, having recently completed a master's degree in bilingual special education.  This fall Linda will be teaching 4th grade students with disabilities in a DC public school and embarking on a doctorate in special education at George Washington University.

 

CAROL MARFISI, Senior instructor Disability Right's and Culture, Institute on Disabilities - Temple University

 

ELIZABETH MATTFELD, graduated with a Master's Degree in Community Psychology from the Sage Graduate School in 1995. She has over 15 years of experience in public health issues including fitness, nutrition, tobacco prevention, drug and alcohol prevention, HIV/AIDS education, violence prevention in schools and mental health issues.  Ms. Mattfeld has been involved with a number of organizations at the local, state and national level, including the New York State Public Health Association, Regional Tobacco Coalitions, the National Liquor Law Enforcement Association and the Ms. Wheelchair program at both the state and national level.  Currently she works as a public health policy consultant with Strategic Applications International and the International Institute for Alcohol Awareness.
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DARRELL W. PONE, MD is Board Certified in Physical Medicine and throughout his career has worked with patients with disabilities living in the lower social economic communities of New York.  Born with cerebral palsy, he graduated Cum Laude with a Bachelors Degree in Chemistry from CW Post of Long Island University.  He studied at Meharry Medical College and was a resident in Physical Medicine and Rehabilitation at Nassau County Medical Center in New York and held a one-year fellowship at Harlem Hospital in Rehabilitation Medicine,

Professionally, Dr. Pone has served as a Consulting Physiatrist for the United Cerebral Palsy of Suffolk County.  He has served as an Assistant Attending physician at Elmhurst Hospital Center; Elmhurst, NY where he trained Resident Physicians and Medical Students.  

 

We’ve Come This Far by Faith is Dr Pone’s autobiography which is now available in its second edition and is available Amazon.com.  Key word, Pone, Darrell   

 

CARLA OSWALD REED has been working with individuals with cerebral palsy and other developmental challenges for her entire 38 year career.  She graduated from the University of PA as a physical therapist in 1969, became certified in the Bobath neurodevelopmental treatment (NDT) for CP in 1972, and completed training with Moshe Feldenkrais in 1983.  In the last 5 years, she has evolved her skills further by participating in and assisting with the Anat Baniel Method trainings in San Rafael, CA.  She lives and practices in Loudoun County in Northern Virginia

 

ROBERT WATSON is the Executive Director of DateAble, a nonprofit dating service for people with and without disabilities. He is also President of United Cerebral Palsy of Montgomery and Prince Georges County (MD) and advises many other disability advocacy organizations. He has spoken in the United States, Canada and Australia on a variety of disability-related subjects, including disability awareness, sexual intimacy issues, personal financial planning for a person with a disability, and the critical importance of being your own personal advocate.

This year’s conference was made possible in part by a CP Awareness Grant from the law firm of Janet, Jenner & Suggs, Baltimore, MD, and by Cerebral Palsy Magazine- www.cerebralpalsymagazine.com

David Bauer Guioco@aol.com, Molly Kennedy mkenn81@aol.com, or Robert Watson robert@dateable.org