Coping and Stress Management

• Come to a meeting and meet others who really do understand!

  • Reasons for not going to a meeting

  • Online Chats might fit your schedule better

• How the Weather Affects your Life, by Lucas J. Mire, the Weather Channel

• Preventing Medical Errors

• Physical Activity and Immune Function, by James S. Huddleston, M.S., P.T.

"Moderate endurance exercise, such as brisk walking, stimulates positive changes in ... the body's first lines of defense ... On the other hand, high intensity exercise may have a negative impact on immune function."

• Hope, by Amanda H.
• Laughter with Hillary
• I see courage
• Love in Time of Sickness
• Laughing Matters
• Calm in Stressful Times
• Stepmom helps children embrace past, future
• Blind Filmmaker: about Adam Linn, actor and director
• Do I Want to Know? by Ken C., Indiana
• Most Important Person, by Craig Lundsted, MSW
• Strength from Adversity
• Cancer Defense and Sleep
• The Sky is Falling, by Patricia F., California
• How Are You? Manage Your Own Medical Journey, review of a book by Patricia Foote, California
• The Friend Who Just Stands By -- dedicated to Jay
• Examining the Faith Factor, by Herbert Benson
• Keeping Faith, by Craig Warnick, Maryland (coping, personal story)
• Living with a Brain Tumor, adapted from U.K. Brain Tumour Action and the American Brain Tumor Association
• The VHL Athlete
• Guided Imagery
• Living with a Rare Disorder
• Spiritual Coping, with David Torres (abstract)
• Life and Living, with Jeanne S. Hoffman (abstract)
• Burnout: rekindling the flame, with Joan McCarthy (abstract)
• Keep laughing to stay healthy, with Jane Hill (abstract)
• Komen Kids, with Kelly Hill (abstract, article)
• Family Coping, with Jeanne S. Hoffman (abstract)
• Disability and Challenge, by Fred Johnson
• Full Catastrophe Living : Using the Wisdom of Your Body and Mind to
• Families Under Stress
• Face Stress, Pain, and Illness, by Jon Kabat-Zinn

Communication with Doctors

• Dealing with Inconclusive DNA Testing
• Managing Your Health Care Team
• Be a Powerful Patient
• Questions to Ask your Doctor about Radio Frequency Ablation or Cryotherapy for Renal Cell Carcinoma
• Preventing Medical Errors
• Communicating, with Janet Brumblay (abstract)
• Advocacy and You, part 2, by Don M.
• Emergency! Are you prepared? (part one)
• Emergency! Are you prepared? (part two)
• Communicating with First Responders
• MedicAlert Identification Bracelets

Complementary Therapies (see also Nutrition)

• Laughter with Hillary
• Difficulty Sleeping?
• Stealth Exercise
• Also see index to Nutrition and Complementary Therapy

Ethical, Legal, and Social Implications of Human Genome Research

• Genetic Non-discrimination
• GINA - The Genetic Information Nondiscrimination Act
• Dr. Francis Collins on GINA
• Human Genome Project, by Altheada Johnson

Childbearing Issues

• Having Healthy Babies
• Our Experience
• Our Best Mistake
• Expecting a Boy
• Childbearing Choices- a series of true stories shared by members
  with definitions and index to this series of articles
  and an excerpt from the VHLFA Policies
  • Our Healthy Baby
  • A Child of Our Love
  • Grieving and Going On
  • Having Normal Children
  • VHL and Pregnancy
  • Life
  • Roll of the Dice
  • Taking the Guilt out of VHL, by Peggy M.
• Professional Perspective, by Debra Collins, genetic counselor, University of Kansas Medical Center, Kansas City
• Mother Care
• Pre-Implantation Testing, by Luba Djurdjinovic, Genetic counselor, Ferre Institute, Utica, NY
• Using PGT, Opinions from the MEN/VHL Conference in the Netherlands, June 1997, reported by Joyce Graff
• Understanding Adopted Children and Families, reviewing The Family of Adoption by Joyce Maguire Pavao

DNA Diagnosis in Children

• The Changing face of VHL
• My DNA Diagnosis, by Heather C., Michigan

Insurance

• DNA Reimbursement Continues
• Thoughts on the new U.S. Health Care Law
• US Health Care Costs
• Genetic Discrimination and Health Insurance
• Debra Collins, Screening complexities and costs: insurance, privacy, and confidentiality
• Genetic Discrimination: What We Can Learn from History, by Paul R. Billings, M.D., Ph.D.

  There is no scientific basis to use genetic data to deny health care coverages to individuals. -- Dr. Billings

• Managed Care

Job Accommodation,
Keeping your Job

See Links

Nutrition

• Doctors attack 'benefits' of low-carb diets
• Caution before taking Herbal Remedies
• See index to Nutrition and Complementary Therapy
• A Few Words to the Wise about Nutrition, by J.E. Brody
  • Diet and Health, free booklet from NIH
• Vegetables: Count on Three to Five Servings, ADA

Possible Danger of Post-treatment Complications

• Aspergillus fungus
• Osteoporosis: a side effect of steroid use, by Altheada Johnson, dietitian
• Preventing Infection
• Caution Urged for Stereotactic Radiosurgery, by Gail S., Tennessee, with Joyce Graff
  • Questions to Ask the Doctor

Regional Support Groups

• Inspire.com
• Feedback from Families with VHL - Online support forum groups
• New Media Ways to Participate
• Go to VHLFA Support Groups or use our Search utility and search for the state or country you wish

Information for Teens

• Dialogue with Members
  • Teen Talk! new series of questions and answers on the internet
    Comments and feedback
• Do I Want to Know? by Ken C., Indiana
• Kortney's story, by Sharon H., Michigan
• My DNA Diagnosis, by Heather C., Michigan

Information for Grandparents

• A Word to Grandparents

Resources

• Spanish Language Hotline for VHL
• Cancer Counseling Line
• Long Distance Love
• National Association of Hospitality Houses
• National Parent-to-Parent Network
• Rare Should Not Mean Alone, a 35-minute video
• New Technology to Make Speech Clearer
• Prepare for Surgery, Heal Faster by Peggy Huddleston (resource)
• How Are You?  Manage Your Own Medical Journey, by Patricia S. Foote includes her VHL story and practical coping tools

Personal Stories

• You can also use the Search utility to search for keyword "mystory".
  Add geographic or medical terms to narrow the search -- "mystory and New York" or "mystory and pheo"
• You are Not Alone
• Running for VHL
• Rock ‘n Roll, running to help all with VHL
• Viviane's Story
• Love in Time of Sickness, by Jody D., Canada
• My Story, by Christy T.
• The Beginning of the Story
• Steven’s Journey
• Ariel's Story
• Alex's Story
• Stormtroopers Unite
• Steven’s Journey
• Edbassmaster and his sister Maureen
• Mom Lives with Rare Genetic Condition - by Vikki Hopes, Abbotsford News, Ontario
• Derik's Big Heart, by Alexandra Lewis, with Ann F., Connecticut
• A Gift of Love, by Bob Horning - a kidney transplant story
• Gokey-Thomas Can't Stop Smiling about "Amazing" Day, by Scott Kindberg, Post-Journal, Jamestown, New York

• KARTOON, by Keith "KARTOON" Richards, Brooklyn, New York

• Pheos and Children, by Alison E., Texas
• It's in the Genes ... of some Pretty Terrific People
• New Chairman for Kansas and Missouri, Barbara S., Kansas
• Brooke McLaurin: Miss North Carolina 2005
• Another Great Birthday! Alex A., New Jersey
• A Patient's Perspective, by Altheada Johnson, Brooklyn, New York
• Top 40 Under 40 - Scott C., New Jersey
• Kortney's story - Sharon H., Michigan
• LoriAnn's Gift, by Janice J., New Jersey
• Wedding Celebration, by Ashlee P., Saskatchewan
• Melissa T. of Texas prepares for the Lake Placid Triathlon 2005
• Woman hopes to Educate Doctors, by Scott Rockefeller, Binghamton, New York
• Birthday Fundraiser in Canada, by Trish B., Alberta
• Keeping Faith, by Craig Warnick, Maryland
• The Long Road to Diagnosis, by Pierre B., Arizona
• Miracles, by Audrey C., North Carolina
• Eddie's Story, by Linda G., Georgia
• VHL Family in Hungary, Hannah S., Budapest
• The VHL Athlete, Jennifer K., Australia
• Learning from VHL, by Mary P., Utah
• Success and Recognition, by Paul B., Quebec, Canada
• A Family Affair, by Paul & Gay V., Australia
• We Thank our Family, by Peggy & Don M., Mississippi
• The Danish Association for von Hippel-Lindau, by Richard & Vibeke H., Denmark
• How Are You?  Manage Your Own Medical Journey, by Patricia S. Foote includes her VHL story and practical coping tools
• A Shared Enemy: Family Fighting Ignorance that Surrounds Hereditary Disease. by M. Scott Morris, reporter
• Paralyzed?  Don't Give Up too Soon!, by Gale L., Florida
• London Concert honors Tim Mason, by Marshall Marcus and Jan Mason
• Remembering Tom Werner, by Evelyn Werner
• Artist and Entrepreneur, by Pierre Jacomet, Chile
• Lifetime Achievement Award to Mike Murray
• God's Living Trees, a poem by Sherri D., Tennessee
• Retired Marine Fights for our Lives, Jay Platt, North Carolina
• There You Are!, Boston cabaret benefit night
• Maria and the Baby Seals - Maria S., Pennsylvania
• Volunteers Making a Difference
  • Help in a Crisis - Robin K., Texas
  • A Letter of Thanks - Fran M., Michigan
    

How you can help VHLFA

• Ways to help the Family Alliance
• Recycle for VHL with Cartridges for Kids
• Add a signature to your e-mail
• Posters to hang up and give out
• Crab Fest in Maryland
• Eat Pancakes!
• City Wide Fundraiser
• Beth Smith and friends complete the Powow
• Report from the Minnesota Chapter
• In Your Own Back Yard, by Amy A., Louisiana
• Painless Donations
• Another way to Help
• Educating and Empowering People with VHL
• Snippets and Happenings
• Calvin's Fundraiser
• Bloomsday Walk Fundraiser
• Powow Triathlon
• Fun and Funraising
• Easy Ideas to Consider

• More ideas...

History of VHL

• The VHL gene, genetics, and mutations, by Dr. James Gnarra
• Y. Edward Hsia, M.D., Introduction to Hawaii 96 Symposium
• James M. Lamiell, M.D., History of VHL (abstract, full article)
• Hartmut P.H. Neumann, M.D., VHL: progress, problems, and prospects (abstract, report)
• Joyce W. Graff, VHL: consumer concerns, needs, and hopes (abstract, report)