Bio and Profile of Liz Webb: UFPH and Ask Emilyss Health Info and Support Online Magazine, since 1996

UPDATE FROM THE FOUNDER, LIZ WEBB:

I want to get my charity domains back under my control so they can be used for the helping people through my foundation again.  I would like to determine where to rebuild and focus my Foundation next.  I'm leaning towards providing a venue for people who are going through, or have been through catastrophic and life altering divorces, and other family issues that can destroy people's lives, but which no one wants to talk about, mainly due to embarrassment and other social influences.

[DOMAINS/WEBSITES/COMMUNITY Sold while I was in the burn unit after a gas explosion destroyed the building which housed UFPH/AskEm headquarters.  At the time it was under the control of my now x-husband, Tim Webb, and my ISP, Ryp Walters, owner, Overcoffee Productions, Cedar Rapids, IA 2004 ~ the by-laws weren't followed since it was a 'non-profit' organization, thus, according to the by-laws, had no monetary value under the law, and therefore cannot be sold. Neither Tim nor Ryp will talk.  Even through the Better Business Bureau.]

    

BACKGROUND INFORMATION:
In 1994 I founded a national non-profit organization which served patients with chronic diseases and their families, United Foundation For Patient Humanities, Inc. and the Ask Emilyss Health Info and Support Monthly Online Magazine. All services were free and the staff were all volunteers, including myself.

In 2004 the building my office was in blew up from a gas leak and burned to the ground, and while I was in the burn unit my ISP sold my domains and dumped all the files, without my knowledge. Everything was destroyed - almost 10 years worth of files, and the backups. Over 100,000 people woke up one day and with no warning, found it gone. People had no way to find the friends they'd met through the foundation's community, and some had no other contact with the outside world due to being bedridden. I was never able to even explain what happened as I was barely alive in a burn unit when the ISP took it down.

I still do street outreach work within the homeless community through my foundation. If someone wants to get off the street, they know I will help them. In return, I feel very fortunate to have been allowed down into their world, and learn their street culture, and street laws, how they survive, and how they got there. And if, for a zillion different reasons, I suddenly became homeless, I would know where to go to find people who would help me, and look out for me. I would know where I would be safe, and with others who knew me. I thank them for letting me know that I have that little safety net, should I ever need it.

PARTIAL SUMMARY OF ACTIVITIES TO DATE:

Founder/Executive Director
United Foundation For Patient Humanities
1996 - Present

 
Founder/Author/Publisher
AskEmilyss ~ Health Info and Support Magazine
1996 - 2004

Founder
Albert Humanitarian Award: Award presented to patient-nominated healthcare workers who've shown outstanding commitment and humanitarianism towards those with HCV and chronic disease
1996 - 2004

Co-Founder/Co-Owner
Political Action/Education Community Discussion List (PAEC)
1996 - 2004


Patient Advisor, Patient Advisory Panel
Amgen Pharmaceutical Co.
Summer, 1997

Member, Board of Directors
Hepatitis C Foundation
1997-1997

Speaker, Patient Advocate
Live National Press Conference, Washington D.C. with C.Everett Koop as co-speaker ~ Held by 'Society for the Advancement of Women's Health Research'
Summer, 1997

Member, Board of Directors
HCV Global Foundation
1997 - 1998


'Expert', HCV and General Medicine
Expertcentral Dot Com (An 'ask' website which provides 'experts' in all fields to answer questions for people.
1999 - 2000

Member
American Association of Law, Medicine, & Ethics
1999 - Present

Member
National Center For Patient Advocacy
1999 - Present

Member
National Hepatitis C Advocacy Council
2000 - 2004

Member
HCV Prison Coalition
2000 - Present

Listing
International Executive Guild
2001 Registry Edition

Nominee, Leadership Award
Robert Woods Johnson Leadership Award Program
2000

Nominee, Remembering Your Spirit Award
Oprah Winfrey's "Using Your Life Award"
2000

MEDIA and SPEAKING

• Press Conference with Dr. C. Everett Koop - Washington,D.C.
• National Public Television - “PBS HealthWeek”
• Fox News "New York Minute"
• NBC Affiliate KGAN- News Story on HCV
• ABC Affiliate KCRG TV - News Story on HCV
• Given interviews for various magazines, newsletters, TV, and other media
• Have interviewed a variety of physicians and book authors (published in the Ask Em Ezine)
• Written articles for various other health magazines
• Online chats for WebMD, and other online services
• Iowa City Press Citizen
• ICON News Magazine
• Patient & Professional Educational seminars, Health Fairs and Conferences
• Austin TX (Health Professional In-service)
• Los Angeles, CA
• San Francisco, CA
• Iowa City, IA
• Cedar Rapids IA
• Chicago, IL
• New York, NY
• Peoria, IL
• Orlando, FL
• Portland, OR
• Washington, DC
• Newspaper and TV stories regarding HCV
• Community News Advertiser
• Guest Host for a variety of educational on-line chats and seminars
• Speaker at Medical and Patient Conferences
• Presented 300 Patient Quality of Life & Healthcare Survey Results presented at NIH Health Conference
• HCV Education Table at Gay Men’s Health Fair - Iowa City, Iowa
• Phone and email support, HCV education, & consultation
• Individual phone or in-person consultations
• 100,000’s of e-mail education, consultation, and support communications

RESOURCE DISTRIBUTION: 

• Books distributed to individuals in 30+ States through the 'Ask Emilyss Community Reading Room'
• - Over 100 Free HCV Testing Kits (donated by Home Health Access) distributed in New York and Illinois, as well as HCV

PATIENT SURVEYS

• Quality of Medical Care Patient Opinion Survey ~ 300 Patients
• Results presented at 1999 National Institute of Health
• Medical Health Conference
• Results posted on Ask Emilyss and UFPH websites for ongoing education and reference by patients and professionals.
• Results used for corporate medical manufacturing presentations such as Johnson and Johnson, Corporation, Hoffman La Roche, Amgen, and Schering-Plough Pharmaceutical Co's.
• Chemotherapy Experience Survey - 700 patients. This was a 2 year, 4 part survey which was ultimately to be written and published as a "Patient Interferon Encyclopedia". It was completed and tabulated and ready to be put into presentation format. The ISP, however, tossed out all the data while I was in the burn unit.

MEDICAL HISTORY MUSEUM/FIELD TRIPS and EXPEDITIONS

• Needle Exchange Program Field trip in Austin Texas, story and photos published in both the Ask Emilyss and UFPH websites.
• 1900 Poor Farm and Insane Asylum in Iowa, story and photos published in both the Ask Emilyss and UFPH websites.
• 1906 Historical Insane Asylum in Peoria, Ill, story and photos published in both the Ask Emilyss and UFPH websites.
• Many short pieces of amazing historical medical trivia

ONLINE SUPPORT

Ask Emilyss Health Info and Support Web Magazine - UFPH and Ask Emilyss receives letters from readers with questions, some of which are chosen and published monthly in the Ask Emilyss Ezine through its main feature, "Shared Voices" column.

SPECIAL SERVICES

• UFPH "Wall of Honor": Venue to develop solidarity in the HCV community honoring those who support our efforts, those who suffer from this illness, and those whose lives have been taken by the Hepatitis C Virus. Memorials are linked to those who've lost their battle with HCV.
• Financial support to HCV groups, educational conference sponsorship, and individuals.
• Peoria Area HCV Support Group
• Yuba-Sutter Hepatitis C Support Group
• Financial assistance to family burdened with loss of loved one who died of HCV at Christmas time, and with inadequate funds to pay for final expenses or headstone.
• Contributed to Special Dog Fund for home-bound HCV patient with epilepsy
• Financial support to individuals and families with related medical and emergency costs.
• Contributor, Women’s Resource & Action Center,
• Sponsorship for Two attendees to the HCV Global Foundation Conference in San Francisco - 2000
• Sponsorship for one attendee to the AASLD conference in Dallas - 2000

PATIENT ADVOCACY AND EDUCATION: People who have contributed to and/or received information and support from UFPH and Ask Emilyss were asked to comment on the organization to help set future direction for the organization. The following are excerpts from what they had to say.

"Liz Webb (Emilyss) is considered to be a pioneer in the HCV education and support arena, as well as considered to be one of the few 'constants', and someone who is 'always there' when crisis arises both to those new and those who've been in the community for a while. People know that when there is no where to turn, Liz is always there to help which is considered to be "a great comfort for the HCV community."

"Liz’s caring attitude and subject knowledge are unique. The site offers more information and communication for HCV sufferers than any other site that I could find. The information seems oriented to the person with the illness, the responses are individualized to your specific situation."

"Having a disease that the medical community promotes as asymptomatic makes the symptomatic patient feel alone and scared. UFPH and Ask Emilyss provides a forum to share, and the comfort of knowing that you are not the only one suffering."

"I think its important to have an objective web site out there that people can visit and not have a product rammed down their throats. Its also quite personalized which it important when people learn they have this disease and see others like themselves, read the articles, etc. and realize they aren’t quite as alone as perhaps they had thought."  

"Unlike other Hepatitis Web sites, Ask Emilyss is not just a clearinghouse for information, but an honest-to-God patient advocacy site—and their ain’t no others that I’ve be able to find." "I no longer feel alone, ignorant, and helpless."  

"UFPH has been instrumental to my personal recovery from number of issues related to living with HCV. The support that Liz gave me, the information she gave me about HCV , and the resources she made available to me have enabled me to start on a path to recovery…Taking this direction has helped to give me hope and life. I believe that I was headed towards death in spirit if not in reality, but Liz Webb and United Foundation for Patient Humanities (UFPH) have saved me. It is up to me to continue in the direction that I have started."  

"Although I’d already researched HCV heavily on the web, I learned a lot from the site. Liz’s personal knowledge of the subject is greater than 98% of medical professionals, in my opinion, and I’ve seen a lot. If you’d gone through the medical process most of us have, of being told that nothing’s wrong with you year after year, doctor after doctor, you’d understand better what this site means. It’s a depressing, demoralizing, experience."

"Ask Emilyss has been a pioneer in bringing awareness to HCV and among the very first to offer support to patients with HCV and their families. Em has long since been a steadfast anchor in the lives of many patients."

"One of the facts unique to this disease is that leaders become too sick and often die, and continuity is a problem. Liz has been the only consistent in this community. At this point she is a universal."

"They have a discussion group that is a widely accepted vehicle for disseminating and gathering information from wide strata of people."

"It provides that human touch so missing in many health care providers, yet it doesn’t unduly denigrate the system."

"What is exciting and unique about UFPH is that it provides support and frank information to persons with chronic disease (HCV in particular) within a very human context. I would like to see the organization continue to provide what I call the "human touch" to people with HCV and other chronic illnesses, whether it be through the web magazine, support groups, or other means of outreach."

EXCERPTS OF QUOTES FROM READERS OF ASK EMILYSS MAGAZINE:

Dear Emilyss(Liz): As a physician and researcher who spends most of his time listening to patients with hepatitis C who have difficulty obtaining adequate, up to date, and worthwhile information, I welcome your efforts to provide quality information to everyone… ~ Gabriel Garcia MD, Associate Professor of Medicine, Stanford University  

Dear Emilyss(Liz),…HCV is a major public health concern, and massive education programs need to be launched to raise public awareness, increase physician education and increase research funding. Your website is an important component of this public education campaign…Keep up the great work! ~ Teresa L. Wright, MD, Associate Professor of Medicine, Chief of Gastroenterology, San Francisco VA Medical Center/UCSF Dear 

Emilyss(Liz), Let me start by saying that you are one of the kindest and most understanding people I know. Thank you for replying to all of my questions! I find it quite amazing and am so glad that there are people like you! What a blessing for the many patients whose lives you have touched. M.J.  

Dear Emilyss(Liz), Last year we talked for nearly 2 hours via telephone. This was shortly after I had been diagnosed with HCV. You made a big difference in my life and calmed me which helped shorten my "gloom and doom" stage. Maureen Dear 

Emilyss(Liz): My 8 yr. old daughter was diagnosed with HCV a few days ago. I need help finding info re: children with HCV. Thank you for any help you may provide. DJP  

Dear Emilyss(Liz): Someone on WebMD said "Don't take Echinacea; it can cause auto-immune hepatitis" and referred to you. Is there an interaction? Is auto-immune hep different than HepC? I loved talking with you; I'm feeling better about my lack of energy & inspiration. Depression is hard enough, without getting depressed about BEING depressed!! I really like your website. Sue  

Dear Liz, my friend, I am #1 on the type A list for a liver transplant. That is very good and I am excited. Thank you for the donation, every bit helps. Thank you for your kind thoughts and prayers. BT