The Sickle Cell Mental Health Initiative of the Sickle Cell Community Consortium is committed to working with the patients, caregivers, and community-based organizations (CBOs) of the sickle cell community to provide mental health support amid COVID-19.
Click the link to join this Webinar by the Sickle Cell Mental Health Initiative.
Schedule:
Tuesday, April 21, 2020 | 7 PM EST, Webinar Discussion With Q&A
Wednesday, April 22, 2020 | 7 PM EST, Community Chat
Each year, the NORD Summit, one of the largest multi-stakeholder events in rare disease, brings together participants spanning the rare community, including rare disease experts and leaders from patient advocacy groups, government, industry, and academia to discuss the most current and critical topics related to rare diseases and orphan products.
When Damian Jackson was a young man, some lawyers helped his family out. “I admired them,” he remembers. “They were smart, and they helped people out. I thought it would be a good thing to go into if I could.” Now, Damian is a litigator with close to two decades’ trial experience and around a hundred jury trials to his name.
Damian’s desire to help others out doesn’t stop when he leaves the office. The Philadelphia man spends his free time speaking up for sickle-cell sufferers, helping them access the health care they need during a crisis, and working to raise awareness of a disease that’s largely misunderstood by medical professionals.
Damian says he’s lucky. After all, he’s had fifty years of pretty good health. This could be attributed to a balanced diet, enough rest and regular exercise. Or perhaps it’s due to his parents, whose experiences with Damian’s elder sister, also diagnosed with the genetic condition at birth, shaped the way they raised him.
When she was 11, her parents, Dan and Effie Frieson, who’d migrated to Chicago from Arkansas in the late ’50s, sent Patricia Frieson to live Down South.
Her grandfather had died, and she was to live with her grandmother in Helena, Ark.
It’s where she’d grow up, finish high school at Barton High in Barton, Ark., go on to attend the nursing program at Phillips Community College there and receive her nursing license.
Frieson, sixth in a family of nine siblings — the others raised in Bronzeville before the family moved to a four-flat in Auburn-Gresham in the mid-70s — passed away Monday at age 61, survived by seven siblings, and her seven beloved nieces and nephews.
The world now knows Frieson as the first person to die of the novel coronavirus in Illinois.
But while her name draws this tragic note in history, one South Side family, in which she played a central role — her apartment in that four-flat the focal point of any gathering — mourns.
At this time of crisis and with the health, safety and well-being of patients and caregivers as its top priorities, the National Organization for Rare Disorders (NORD®) today launched its COVID-19 Critical Relief Program to provide much-needed assistance to members of the rare community affected by the COVID-19 pandemic. The program provides financial relief that may be utilized to support critical, non-medical needs.
“Providing financial assistance to help meet the unique needs of the rare disease community has been central to our mission for over 37 years,” said Jill Pollander, RN, MSN, Director of Patient Services for NORD. “The NORD COVID-19 Critical Relief Program enables us to provide desperately needed support to rare disease community members whose lives have been directly impacted by the current pandemic.”
Through the new program, NORD will provide financial assistance to eligible patients, covering up to $1,000 annually. It provides funds for essential expenses including, but not limited to unexpected utility expenses; cellular or internet service; emergency repairs to car, home or major appliances; and rent or mortgage payment assistance. Interested rare disease patients and families can reach out to NORD to find out if they meet eligibility requirements.
For more information on the NORD COVID-19 Critical Relief Program and to apply, please contact NORD by telephone at 203.242.0497, via email at COVID19assistance@rarediseases.org, or visit rarediseases.org. To show your support, please consider making a donation to the program so that even more people can be helped. Finally, to stay informed, the NORD COVID-19 resource center presents information and links relevant to the rare community during this pandemic.
A national awareness campaign to celebrate World Sickle Cell Awareness Day on June 19, 2023.
The William E. Proudford Sickle Cell Fund, Inc. invites you to join with friends, family, neighbors and others in your community, as people around the nation and across the globe, host and hold local gatherings to shine the light on sickle cell disease. Together, we must and will find a universal cure for sickle cell disease!
This year, Sickle Cell Disease community-based organizations are organizing gatherings on June 19 all across the nation and around the world to “Shine the Light on Sickle Cell Disease” while celebrating World Sickle Cell Disease Awareness Day in order to elevate awareness of this serious public health concern affecting more than 100 million people around the world.
If you are interested in hosting a Shine the Light gathering in your community, you will find some ideas and tips in this Community Gathering Guide to help you get started and have a successful event … or if you just want to attend a gathering hosted by others, you can find out where one is being held near you.
The U.S. Food and Drug Administration (FDA) recently granted orphan drug status to olinciguat (IW-1701) as a potential treatment of sickle cell disease (SCD), Ironwood Pharmaceuticals announced.
Evidence suggests that the symptoms of sickle cell disease may be associated with nitric oxide deficiency in the blood. Nitric oxide is a free radical produced by several cells and used as a signaling molecule that works to induce cellular events that promote blood flow. Patients with sickle cell anemia have a reduced bioavailability of nitric oxide.
Olinciguat is an oral investigational therapy that stimulates an enzyme called soluble guanylate cyclase (sGC), known to play a key role in the production of nitric oxide.
The stimulation of sGC can restore the bioavailability of nitric oxide in the blood to increase blood flow, which may stop the destruction of blood cells and help address disease symptoms.
At the urging of family members, Wanda Bailey checked into the emergency room on the night her sister, Patricia Frieson, died after contracting COVID-19.
Frieson, 61, was the first person in Illinois to die of an infection from the novel coronavirus on March 16, and Bailey had also begun experiencing breathing problems, family members said.
“We were told all we could do is hope and pray it got better,” said Richard Frieson, the women’s brother.
But nine days after her sister’s death, Bailey, 63, of Crete, died Wednesday morning at a hospital in south suburban Olympia Fields, according to the Cook County medical examiner’s office.
Sickle Cell 101 is hosting an online meetup on Thursday, April 23, 2020 at 8:00pm EDT.
Share your experience in dealing with sickle cell, while discussing how to stay positive, productive, and informed during the COVID-19 pandemic with host Andre Harris.
Participate via Zoom (limited spots available) where you can share OR Facebook Live on the Sickle Cell 101 Facebook page where you can listen in and comment.
Registration is only required if you want to participate via Zoom.
