Your proactive fight against HD

Charting the Waters

Are you looking for a compass to help you navigate the turbulent waters of Huntington's Disease? There are many sources of help available to you through this page and at www.hdac.org.

Phil Hardt advocates strongly for those with HD. He has tested positive himself, has been proactive in his own treatment and spends an enormous amount of time helping others with HD or who are at risk.

Phil Hardt writes, "I for one am tired of seeing suffering, grief and heartache wherever I have been to speak because there is nothing out there to warn and help those who are at-risk or gene positive yet still asymptomatic to make better decisions NOW to protect themselves, their families, and their futures. If we're going to break this ill-fated cycle of HD caused by not being adequately prepared, we've got to begin doing things differently, and soon!"

"I wrote 14 Changes That Could Signal Concern In HD - to inform and teach about the softer symptoms of HD in a manner that can be easily understood, allowing everyone to recognize their subtleties early on so they can cope positively with them, instead of letting them ruin their lives."

"I have also developed guidelines to help many Phds (person's with HD) successfully apply for Social Security Disability and other type of disability on the first go round." (Phil Hardt on Social Security).

Downloadable Resources

• Brochure that discusses suicide and depression in HD. (pdf)
• Example letter to a judge explaining the "softer symptoms" of HD (pdf) (click here for MS/Word Format)
• HD At-Risk Brochures (pdf):
  • English version
  • Spanish version

Advocacy Articles and Speeches

• Enjoy volunteering
• 2006 HDSA speech: Living Positively with Huntington's Disease
• Step by Step Social Security
• HD Care Standards - The problem and the challenges.
• Eliminating suicide
• 14 changes that could signal concern.
• Make better decisions now!