My Incredible Journey...



 

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Phillip J. Hardt
 



                                                        

 



EDUCATION
:
Western New Mexico University
, Silver City, NM
Master of Arts,  English, 12/20/95, Valedictorian
Published Thesis:  Topical Guide to William Faulkner’s Light In August

Western New Mexico University, Silver City, NM
Bachelor of Arts, English, Minor:  Computer Science 5/30/95

Cochise College, Douglas, AZ

Associates In Arts, 5/30/75
 



TEACHING:
Cochise Community College, Douglas, AZ (8 years)
Gateway Community College, Phoenix, AZ (1 year)
Associate Professor:  Business Communications, Keyboarding, Computer Science, Computer Programming, Computer Applications, Main Campus for 8 years and Arizona State Prison Complex Douglas for 3 years.  (Taught 11 credit hours total per semester.)
 



PROFESSIONAL NON-PROFIT EXPERIENCE:
Executive Director -
October, 2008 – Present
Hereditary Neurological Disease Centre Arizona, Specializing in Huntington’s Disease

Assist those with HD get off the streets, out of jail, and out of what ever predicament they are in and onto higher ground.  Assist Phds get into safe assisted-living facilities, get onto State and Federal benefits like Social Security Disability to increase their monthly income, and get onto medical benefits and
in to see a competent Neurologist for continuing care.  Educate spouses and other families regarding HD and how to live positively with it.  Do whatever is necessary to help individuals and their families have the highest quality of life they can!  Make Phds aware of clinical research trials.

Consumer Advisor Board Member - July 2008 - Present
Phoenix Children’s Hospital (PCH) 340B Hemophilia Factor Program

As an advocate for those who have bleeding disorders in Arizona, make recommendations to PCH regarding which bleeding disorder programs should be approved and how much of the 340B money each should  receive.  

Human Rights Committee Member - October 10, 2008 – April 1, 2010
Arizona Department of Economic Security, Division of Developmental Disabilities for Pinal County

Advocated and protected vulnerable children and adults with Developmental Disabilities in Pinal County to assure that none of their human rights were violated!  Reviewed all alleged rights violations and investigated every death.  Reviewed all behavioral care plans and medications to assure no human rights were violated on an ongoing basis.

Chief Volunteer Officer and Executive Director (President) -
August 30, 2002 – September 2, 2008   Huntington’s Disease Society of America, Arizona Affiliate

Director, HD and JHD Annual Retreat -   June 2002 – June 2008
Huntington’s Disease Society of America, Arizona Affiliate

El Guerro de Enfermedad de Huntington (HD Warrior) – November 2008
Name given to me by Dr. Jorge Daza, Neurologist in Barranquilla, Colombia, South America for organizing and leading my three (April 2006, February 2007 and November 2008) Humanitarian Trips to Juan de Acosta, Colombia, South America to provide clothes, running water, doctor assistance and educational Information on HD in Spanish. 

Board Member -   July 1998 – June 2000
Huntington’s Disease Society of America, Arizona Chapter

President and Founding Board Member, DASN -   August 2001 – October 2003
Dementia Advocacy and Support Network International

President -   June 1995 – July 1997
Cochise County Historical and Archaeological Society
Oversaw museum docents, artifacts, donations and displays.  Input description of all artifacts in museum.
 



PROFESSIONAL EXPERIENCE:
Allied Signal Automotive and Aerospace -   
January 1989 – November 1997
*Operational Excellence Six Sigma “Black Belt” and Lean Manufacturing Expert
*Operations Manager
*Senior Buyer
*MRO Buyer

Phelps Dodge Corporation -   June 1976 – August 1983
*Sulfuric Acid Plants General Foreman
*Smelter Instructor for Process Flows and Central Control Room Classes
*Central Control Room Technician
*Testman for EPA Methods 5 and 8 and Particulate Matter Loadings
     Publications:  Process Flows Manual, Central Control Training Manual,
     Chemico Acid Operations Plant Manual, Lurgi Acid Plant Operations Manual

Forward Industries -   July 1975 – June 1976
*Junior and Non-Woven Fabric Buyer
 



HONORS AND AWARDS: 
*Huntington’s Disease Society of America - Person of the Year – June 2001

*Huntington Disease Lighthouse - “Making the Light Brighter” award for those with HD – November 2001
 



SPEECHES, HUMANITARIAN MISSIONS, ADVOCACY and TESTIMONY GIVEN:
(Total HDSA Support Groups I've spoken at:  25; Total HDSA Annual State Meetings I've Been Keynote Speaker at:  7;  Total HDSA National Conventions I've spoken at: 4; Total International Conventions and Support Groups I've spoken at: 6)

*May 21, 2011 Rochester, NY Spoke at HDSA Support Group

*April 27, 2011 Had “HD At-Risk Checklist” brochure redone in new format

*July 2008 “The Perception of Dysarthric Speech” Assisted Dr. Caviness and Dr. Liss chose Phds who were having speech problems and transported them to the Mayo Clinic for testing.

*June 1-3, 2008 Prescott, AZ Organized, directed and spoke at Annual HDSA Phd and Caregiver Retreat   78 in attendance

*November 9-22, 2008 Final Humanitarian Mission to Bogota & Juan de Acosta, Colombia, South America  (Juan de Acosta has Second highest concentration of Huntington’s Disease (HD) in the world, next to Lake Maricoba, Venezuela.)  Purchased medications, wheelchairs, food, clothing, family planning helps, pigs and chickens for impoverished families struggling with HD.  Hooked up electricity and ran potable water to families. Provided information on HD, Basic Self Reliance and Family Planning  information in Spanish to families. 

*June 1-3, 2007 Prescott, AZ Organized, directed and spoke at Annual HDSA Phd, JHD and Caregiver Retreat   147 in attendance

*February 17-25, 2007  2nd Humanitarian Mission to Medellin and Juan de Acosta, Colombia, South America  (Juan de Acosta has Second highest concentration of Huntington’s Disease (HD) in the world, next to Lake Maricoba, Venezuela.)  Purchased medications, wheelchairs, food, clothing, family planning helps, pigs and chickens for impoverished families struggling with HD.  Hooked up electricity and ran potable water to families. Provided information on HD, Basic Self Reliance and Family Planning  information in Spanish to families.  Visited individuals and families at their homes and in huge town meetings to talk about HD and how it is inherited.

*January 21, 2009 Düsseldorf, Germany, Spoke to Support Group.  My talk was arranged by Dr. Herwig Lange, MD.  Christine Lohkamp, past President of the International Huntington Association was also at the meeting.

*January 17, 2009
  Malta, Spoke to Support Group on this beautiful island in the Mediterranean Sea.

*June 2-4, 2006 Prescott, AZ Organized, directed and spoke at Annual HDSA Phd, JHD and Caregiver Retreat   ?? in attendance

*June 29, 2006 Had English and Spanish handouts (based on ones used by San Diego Chapter) on HD detailing how to contact the HDSA AZ Affiliate and the 3 main HD Neurologists in AZ. 

* April 3-18, 2006  Humanitarian Mission to Medellin and Juan de Acosta, Colombia, South America  (Juan de Acosta has Second highest concentration of Huntington’s Disease (HD) in the world, next to Lake Maricoba, Venezuela.)  Purchased medications, wheelchairs, food, clothing, family planning helps, pigs and chickens for impoverished families struggling with HD.  Hooked up electricity and ran potable water to families.  Provided information on HD, Basic Self Reliance and Family Planning  information in Spanish to families. 

*April 2, 2006 Had “HD Depression Brochure” translated into Spanish:  “HD Afecto Depresión”

*September 9, 2005 Wrote “HD At-Risk Brochure.”  Distributed and put on HD Lighthouse website.

*September 7, 2006 Had “HD At-Risk Brochure” translated into Spanish:  “Enfermedad de Huntington “En-Riesgo” Preparación Lista de Asuntos“

*July 18, 2005 Wrote “HD Depression Brochure” to raise awareness of the extremely high suicide rate for those with HD.  Distributed and put on HD Lighthouse website.

*June 3-5, 2005 Prescott, AZ Organized, directed and spoke at Annual HDSA Phd, JHD and Caregiver Retreat   104 in attendance  

*June 10, 2006 Milwaukee, WI HDSA Annual Convention   Spoke as member of Testimonials Panel to Living with HD

*May 26, 2006 San Diego, CA Spoke to HDSA Support Group

*November 21, 2005  Re-Published Afraid, A Book For Children At-Risk for HD that was written by my gene negative daughter Michelle and illustrated by Phd Pat Leslie!  Afraid has since been translated into Italian, French, Spanish, Portuguese, German, Dutch, and Korean and sent to the various International Huntington’s Associations countries for giving out to affected children!  The book details me and a few of the many symptoms I had when I first became symptomatic.

*April 19, 2005 Tucson, AZ Spoke at Colloquium where Initial Results of Hearing and Comprehension Study were presented.

*March 17, 2005 Tucson, AZ Spoke at HDSA Support Group

*
October 18, 2004 Gave testimony to NIH Committee on Genetic Discrimination (SACGHS)   Webcast and Transcript – Testimony was crucial in getting GINA passed.  I was honored to be one of seven individuals chosen from across the whole United States chosen to give testimony.

*July 17, 2004 Des Moines, IA Keynote speaker for Iowa HDSA Annual Meeting

*June 4-6, 2004 Prescott, AZ Organized directed and spoke at Annual HDSA Phd and Caregiver Retreat    68 in attendance

*June 14-16, 21-22 & 28-30, 2004 & July 2, 26-28 World’s first Hearing and Comprehension Study at the University of Arizona in Tucson.  Organized participants and drove some of them the 3 hours round-trip to Tucson for their 6 hours of testing!  Eighteen individuals, including myself, participated!

*May 4-6, 2004 Sacramento, CA Keynote Speaker for Northern California’s HDSA Annual Meeting.  Participated on panel with Andrea Zanko, presented several workshops on "living positively with HD," and then gave closing remarks to everyone assembled!

*November 20, 2004 Wichita, KS Spoke at Support Group

*November 18, 2004 Kansas City, KS Spoke at Support Group

*March 9, 2004 Rochester, NY Spoke at Support Group

*February 24, 2004 Austin, TX Spoke at Support Group

*February 21, 2004 San Antonio, TX Spoke at Support Group

*January 22, 2004 Kansas City, KS Spoke at Support Group

*June 14, 2003 Storm Lake, IA Keynote Speaker at Iowa’s HDSA Annual Meeting

*May 30, 31 and June 1, 2003 Organized, directed and spoke at Annual HDSA Phd and Caregiver Retreat    46 in attendance

*April 30, 2003 First ever Broadcast by the National Center for Neurogenic Communication Disorders titled “management of Speech, Language and Swallowing Disorders in Huntington’s Disease” that was broadcast live to over 500 training, Veteran’s and other medical institutions across the United States.  Helped Organize and videotape 9 Phds from the Arizona Affiliate that were used in the broadcast!

*April 12 – 19, 2003  Living Positively with HD, Despite the Odds Associazione Mauro Emolo O.N.L.U.S.- Four Italian HD Conventions

Rome  Grand Hotel Hermitage 4-12-03  Keynote Speaker
Taranto  Auditorium Nuovo Padiglione 4-13-03  Keynote Speaker
Bologna  Sala Congressi “Baraccano”  4-18-03  Keynote Speaker
Milano  Istituto Auxologico  4-19-03  Keynote Speaker

*February 9, 2003 Sioux Falls, IA HDSA Spoke at HDSA Support Group

*January 23, 2003 Fort Collins, CO HDSA Spoke at HDSA Support Group

*January 23, 2003 Colorado Springs, CO Spoke at HDSA Support Group

*January 22, 2003 Englewood, CO Spoke at HDSA Support Group

*October 20, 2002 Published Afraid, A Book For Children At-Risk for HD that was written by my gene negative daughter Michelle and illustrated by Phd Pat Leslie!  Book republished November 21, 2005!  Afraid has since been translated into Italian, French, Spanish, Portuguese, German, Dutch, and Korean and sent to the various International Huntington’s Associations countries for giving out to affected children!  The book details me and a few of the many symptoms I had when I first became symptomatic.

*June 7-9, 2002 Storm Lake, IA Spoke at Iowa’s HDSA Annual Meeting and presented several workshops.  Entertained everyone by playing piano!

*May 30, 31 & June 1, 2003 Organized, directed and spoke at Annual HDSA Phd and Caregiver Retreat

*May 14-16, 2002 San Diego, CA Spoke on Panel to kick-off of PREDICT study.  Asked by Dr. Jane Paulsen, principal investigator for PREDICT

*May 31 – June 2, 2002 Organized, directed and spoke at Annual HDSA Phd and Caregiver Retreat

*May 26-28, 2002 Michigan Keynote Speaker at Michigan’s HDSA Annual Meeting

*April 27, 2002 Lansing, MI Spoke to HDSA Support Group

*March 23, 2002 Seattle, WA Keynote Speaker for Northwest Regions HDSA Annual Meeting

*March 21, 2002 Seattle, WA Spoke to three (3) HDSA Support Groups

*March 17, 2002 Tucson, AZ Spoke at HDSA Support Group

*February 18, 2002 Houston, TX Spoke at HDSA Support Group

*February 16, 2002 San Antonio, TX Spoke at HDSA Support Group

*January 17-19, 2002 Baltimore, MD Spoke at HDSA Support Group

*November 11, 2001 Orange County-Los Angeles, CA Keynote speaker for Greater Los Angeles’ HDSA Annual Meeting

*October 18, 2001 San Francisco, CA Spoke to Mill Valley Support Group

*October 20, 2001 San Francisco, CA Spoke to Berkeley Support Group

*October 8-11, 2001 Michigan Spoke to three (3) support groups.  My “Living Positively with HD” speech was videotaped and shown during the months of October & November 2001 on Michigan’s PBS channel.  The Michigan chapter made copies of my speech and mailed a copy to each chapter in the US.

*September 2001 Tucson, AZ In coordination with a genetic testing facility, I implemented the first Anonymous Genetic Testing location and procedures to protect individuals from flagrant genetic discrimination.

*July 2001 Phoenix, AZ Sent letter to Alzheimer’s Disease International (ADI)  Elizabeth Rimmer, Executive Director, asking her to include someone with dementia as a plenary (keynote) speaker at their upcoming ADI conference in Christchurch, New Zealand in September 2001.  She agreed and Christine Bryden was the very first person with dementia to attend an ADI conference as a full participant and the world’s first person with dementia to present the plenary address there!  After this paradigm was overcome, on October 15, 2003, a person with dementia was appointed to the Board of Directors of ADI as a fully participating member!

*July 2001 Phoenix, AZ Incorporated Dementia Advocacy and Support Network International (DASNI) in Arizona as a 501 (C) (3) non-profit charity.  Established Board of Directors and Bylaws! 

*June 2001 Bozeman, MT Elected President of the Dementia Advocacy and Support Network International (DASNI) at the second annual meeting

*June 30, 2001 San Diego Awarded prestigious “HDSA Person of the Year” award “For His Example to Others Living with Huntington’s Disease.”  Served on this convention’s Steering Committee to help organize and recommend speakers.   

*June 30, 2001 San Diego, CA Keynote Reform Speech on Standards of Care – HDSA Annual Convention

*October 6, 2000 Attended first meeting of the Dementia Advocacy Support Network in Bozeman, Montana http://www.dasninternational.org/2011/DASNI_A5_12pp_Final.pdf

*June 10, 2000 Orlando, FL Spoke at HDSA Annual Convention - “Men Living with HD”
 



CLINICAL RESEARCH STUDIES PARTICIPATED IN -
1997 TO 2011:
 

  • PHAROS at May Clinic, Scottsdale, AZ – 3 years

  • PREDICT 1 & 2, at Hereditary Neurological Disease Centre (HNDC), Wichita, KS – 9 years

  • FuRST-pHD at Phoenix, AZ– 2 years

  • Hearing and Comprehension Study at University of Arizona, Tucson, AZ  (250 miles round trip)

  • fMRI Longitudinal Assessment of Frontostriatal Activation in Subjects At-Risk for HD at University of California San Diego (UCSD),  (600 miles round trip) - 2 years

  • Gait Study at San Diego State University (SDSU) (600 miles round trip)

  • Temporal Order Memory Study at SDSU (600 miles round trip)

  • fMRI at Cleveland Clinic, Cleveland, OH

  • Vision and Eye Movement Tracking at UCSD (600 miles round trip)

  • Vision and Eye Movement Tracking at Cleveland Clinic, Cleveland, OH

  • Balance Study at UCSD, (600 miles round trip)

  • COHORT (soon to be ENROLL-HD) at UCSD (600 miles round trip) – 3 years

  • Annual Cognitive Testing at UCSD, San Diego, CA  (600 miles round trip) 3 years

 


 

SCHOLARLY ARTICLES & BROCHURES WRITTEN:
*
Sub-Cortical Frontal Dementia in Huntington's Disease, June 2009

*Using the Neuropsychological Exam and Other Tools To Help Those Struggling With the “Softer” Symptoms of Huntington’s Disease - October 2008

*Hitler's 'Cure' for Huntington's Disease - April 2007

*Defense Letter Sample for Someone with HD Arrested for Embezzling Millions of Dollars - December 2006

*Michael J. Fox Stumps for Candidates and Stem Cell Research in Tempe, AZ -November 2006

*
HD, eHarmony and Me – November 2006

*Volunteering – September 2006

*HD Patients Relegated to “Jails” in Colombia, South America – September 2006

*Phil Hardt on Social Security Disability - June 2004 and Revised August 2006

*HD At-Risk Brochure (In English and Spanish) – June 2005

*HD Affected Depression – Zero Suicides Brochure – June 2005

*14 Changes that Could Signal Concern – May 2002

*Making Better Decisions Now – May 2002

*HD, Marriages and Relationships – May 2000

*My Visit to the Speech Therapist - A discussion of swallowing problems. – April 2000

*What Huntington’s Disease is Like for Me – October 1999

 



ARTICLES AND VIDEOS ABOUT PHIL HARDT:
*Mesa Man’s Plight Caps Call for Stem Cell Funds – January 2007
U.S. Chamber of Commerce website:
http://elections.uschamber.com/electionportal?action=viewNewsArticle&docId=505145&databaseId=67

AZ Congress Watch Website
Mitchell Gives First Floor Speech – January 2007
http://www.azcongresswatch.com/?p=2707

*Mitchell Urges Support for Stem Cell Research – January 2007
http://www.hdac.org/features/article.php?p_articleNumber=351

Media:
AZ Daily Star
http://www.azstarnet.com/metro/164610

East Valley Mesa Tribune
http://www.eastvalleytribune.com/index.php?sty=82197

*Living with HD video parts I & II – November 2001
(Old Link is Defective 11-18-11)
 



RADIO BROADCASTS BY PHIL HARDT

Interviewed twice by Dr. Ben Eubanks on his popular radio talk show “Doc Talk”- once on Huntington’s Disease and once on Huntington’s Disease and Genetic Discrimination in  May and August 2004.  Audience was approximately 500,000 people!


 

 
 
         
   

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