AskEmilyss.com
Ask Emilyss
This site was formally a highly active community magazine and website (and pioneer of the internet, founded in 1996)for patients with chronic disease and family issues (including HCV information and education) site, which is one of the free services provided by United Foundation For Patient Humanities, Inc. The Founder, Liz Webb (Emilyss) created, wrote, and published it for almost eight years to over 120,000 readers per month. After fire destroyed the building and put the founder in a burn unit on and off for a year. During this time, wihtout knowledge of the founder it was sold and overnight it disappeared from the internet without notice to homebound patients who's only connection to the world was through the Ask Em community - losing friends, email addresses, the educational and entertaining contents were 'dumped'. The by-laws were ignored: They clearly state that it was never to be used for profit. It was and still is registered through Enom (originally in '96) and whoever holds it now remains protected via 'private listing' and has refused to give it back or say who he/she/they are even though it is of no value even for a parking domain, as without 'Emilyss' no one cares to go there. It was sold in 2004 and still remains a private listing which takes offers for sale. Progress into discovery and details will become public along with those involved. Domain laws verses non-profit by-laws need to be addressed and protection from this type of covert and illegal and immoral and greed-ridden sale/purchase by ISP's. The ISP was OverCoffee Productions, Ryp Walters/owner, refuses to provide any information on who exactly sold it and why. The only information I was given was that he sent an email and received a response that it was 'no longer wanted'. This, of course, could not happen as the computer was burned into a melted mound and are not available to patients in burn units who are critically injured. The credibility of both the founder and the mission of UFPH were severely damaged. It was a bit like someone selling a community library and community center and destroyed the books and equiptment so as to turn it into a nightclub or bar to sell liquor and food to make lots of money. To this day Ask Emilyss website remains a for-profit domain which sits empty. But more will be disclosed and hopefully the domain will be regained and rebuilt to once again serve people who need its free services.
Description
Excerpted from the website description:
- The first internet search engine for domain offers, which are for sale. We have over 3.000.000 domains in our database. If you have domains/URLs to offer, place your free ad here!
Correct Description
(From the archives in the internet historical library)
Discussion
What People Are Saying About UFPH/AskEm Organization:
People who have contributed to and/or received information and support from UFPH & 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’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 testimonials, 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 from readers of the '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
Note: This website was a pioneer of the internet, however it was never a search engine for domain offers, the by-laws forbid it to ever be used for sales of any kind. If anyone has ever known, had a family member who was chronically ill, or ill yourself you would know what this webmagazine & community meant.
ADD FOR UNITED FOUNDATION FOR PATIENT HUMANITIES AND ASK EMILYSS DOMAINS: My offer is that the 'holder' donate it back for a tax write-off and a huge amount of gratitude from the founder, Liz Webb, and all the ill patients who it was taken away from. Email: Lizwebb.mi@gmail.com
Languages
English
Contact
Liz Webb, Founder/President lizwebb.mi@gmail.com 734-369-8448
Additional Information
For more information contact Liz Webb at the email or phone listed above.
History
http://web.archive.org/web/20040924232530/http://www.ufph.org/ http://web.archive.org/web/20040925050410/www.askemilyss.com
Related Domains
NOTE: None of these domains were related to UFPH/Ask Em until it became websites to sell advertising space for the following (except for the CDC - Center for Disease Control):
External Links
NOTE: The following categories were created by the purchasers of the sites for profit and not representative of the organization.
