What's New Archive For
defiers.com

 
dot30 October 2000
Read a defier response to the Election Special! page.
 
dot29 October 2000
Recently S.C.A.R.E. founders Ivor and Deborah Pannell appeared on the Montel Williams Show. The experience was not what they expected. Read Deborah's account here.
dot9 October 2000 Montel

S.C.A.R.E. founders Ivor and Deborah Pannell to appear on the Montel Williams Show on Monday, October 16th, to participate in a discussion on Race in America.
 
As an inter-racial couple, the Pannells have a unique perspective on issues of race when it comes to obtaining adequate treatment and services for Ivor's sickle cell. After seeing the recent article on sickle cell disease in the New York Daily News that featured an extensive interview with Ivor, the producers of the Montel Williams Show requested that he and Deborah come onto the program to detail some of the troubles they have had around the issue of filling prescriptions for pain medication.
 
Tune in to see how they frame the issues in the larger context of human rights abuses and the resulting need for advocacy in the sickle cell community. If the good bits make it to the final edit, an important message will reach over 4 million television viewers! Check your local listings for broadcast times in your area. 		Montel

dot21 September 2000
Election 2000 is critical for the Defier community. Our Election Special! page will help you make the critical decisions.
 

dot13 September 2000
FLASH!
S.C.A.R.E. featured in The New York Daily News:
Click here to read the whole article.
Ivor Founders, Ivor and Deborah Pannell and Advocate, Taeshea Martin are featured in an extensive article about sickle-cell disease in The New York Daily News titled: Sickle Cell - Pains and Gains Racial prejudice complicates some patients' lives, but there is new hope.

 
dot4 September 2000
Two encouraging studies of the safety and efficacy of Hydroxyurea have been reported. The first, published in the July/August issue of the Journal of Pediatric Hematology/Oncology, found that hydroxyurea, used to manage sickle cell disease in adults, is also safe and effective in children younger than 5 years of age who have the disease. The second study, presented by Egyptian researchers at the 28th World Congress of the International Society of Hematology, reported that hydroxyurea is not associated with any chronic organ damage when given continuously for as long as 5 years. Both studies were reported on medscape.com.
 
dot20 August 2000
Exciting treatment news is reported on the Research page. The study describes how a single dose of an asthma drug, cromolyn sodium, causes a "striking decrease" in sickle cells in African children with severe sickle cell disease.
 
dot17 August 2000
S.C.A.R.E. President to Speak at Harrisburg, Pennsylvania Dinner:
On Saturday, August 19th, the South Central Pennsylvania Sickle Cell Council will hold a dinner to kick off their Regional Community and Professional Education Program. The keynote speaker will be Ivor Balin Pannell, Founder and President of Sickle Cell Advocates for Research and Empowerment, Inc. (S.C.A.R.E.). The event will be held at the Crowne Plaza Hotel, at Second and Chestnut Streets in downtown Harrisburg. A reception will begin at 6:00pm and the dinner will begin at 7:30pm. For more information and tickets, contact Jeannine Peterson at (717) 232-9880.
 
dot12 AUGUST 2000
The Bloodsongs section has been enhanced with an article that was first printed in a more edited form in the New York Times on June 25, 2000 under the title, "A Normal Life, Plus Agony." Here, in its entirety, is "Living With Sickle Cell Disease" by Janis Spurlock-McLendon. We invite others in our community to add their voices to this section (see Contact Us for more information about submissions).
 
23 JULY 2000
Updated Links page has a wonderful new link to The Georgia Comprehensive Sickle Cell Information Center. Check it out http://www.emory.edu/PEDS/SICKLE/ and be sure to visit their News page for exciting community developments.
 
28 JUNE 2000
This important bill for the sickle cell community has not yet passed because of the inactivity of Governor George Pataki. Click here to see how New York advocacy groups are keeping the pressure on despite the end of this legislative session. Learn how you can become involved in the fight to allow people with disabilities to earn a decent living without losing their Medicaid coverage. If passed in New York, the Work and Wellness Act of 2000 could set an important precedent for the rest of the country!
 
13 JUNE 2000:
Read what people in Massachusetts are doing about guaranteeing health care coverage for all residents. For more information click here.
And don't forget to check out www.familiesusa.org for the latest updates in your region. It's time for the sickle cell community to become involved in the fight for universal health care coverage!
 
9 JUNE 2000:
More to be done by all you health care advocates: To ensure that health care professionals and workers are able to speak out on behalf of their patients, please support the Whistleblower legislation A.3089 (Nolan) / S.1453-A (Spano) currently before the Senate. Similar legislation has already passed the Assembly. Such legislation would prohibit retaliatory actions by employers against employees who provide certain information to a governmental agency or department. For more information click here.
 
10 MAY 2000:
Happily, the SCARE logo and motto, Turning Fear into Actionregistered, are now registered. The site has been updated to reflect this upgrade.
 
28 APRIL 2000:
Updates to the Family album and to the links page.
 
More action on our Activism in the Sickle Cell Community page. Read about an exciting forum discussing the Canadian model of health care delivery. Additionally, the New York state legislature is considering a law that would allow people with disabilities who are returning to work to keep their Medicaid coverage. This one is particularly important for the sickle cell community, as the threat of losing Medicaid keeps many sickle cell defiers from pursuing work. Learn what you can do.
 
MARCH 2000:
Energy is surging on our Activism in the Sickle Cell Community page. Read about how to be involved in bringing our issues to the fore in public and political arenas. This month, the page features RESCUE HEALTH CARE DAY, (modeled on Earth Day). On Saturday, April 1st 2000, local actions will be taking place all over the country. Get involved and represent the sickle cell community at a local action near you click here.
 
On the Empowerment page we have a reprint of an article published in American Pain Society Bulletin (July/August 1999 Issue Volume 9 Number 4) by Deborah Oster Pannell titled -
Living with Sickle Cell Disease: From Suffering to Empowerment.
 
FEBRUARY 2000:
Check out the Walkathon page to read an account submitted by Debra Green of her family's experience during the walk last fall.
 
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