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July 2022
Cystic Fibrosis Research Institute’s Navigating Grief to Growth: Bereavement Support Group
Navigating Grief to Growth: Bereavement Support Group July 5th, 2022 A discussion and support group for those who have lost a loved one to CF, whether recently or in the past. Led by Isabel Stenzel Byrnes, LCSW, MPH, a grief counselor who also lives with CF, the group provides a safe place to engage in focused practices to help experience growth in coping with the loss of a loved one. Each meeting has a different topic but there will also…
Find out more »The Center for Chronic Illness Web-Based Rare Chronic Illness Support Group
Web-Based Rare Chronic Illness Support Group A peer support group for those living with rare health challenges led by Kerry Heckman, MSW, LICSW 1st Tuesday of each month, 4-5pm PST / 7-8pm EST To sign up for free, visit www.supportgroupscentral.com/CCI
Find out more »The Center for Chronic Illness WA State Rare Chronic Illness Support Group
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!
Find out more »The Center for Chronic Illness: Parenting Chronic Illness Webinar
Parenting Chronic Illness Webinar A web-based peer support group for parents of children living with health challenges led by Natalie Hopkins, MSW 2nd Monday of each month from 4-5pm This program is currently meeting virtually. To sign up, visit www.supportgroupscentral.com/CCI
Find out more »Cystic Fibrosis Research Institute’s Virtual Support Group for the Spanish-Speaking CF Community
Virtual Support Group for the Spanish-Speaking CF Community July 13th, 2022 This monthly group meets on the second Wednesday of every month and addresses the unique issues faced by Hispanic/Latinx individuals and families affected by CF. The group is open to adults with CF as well as family members of adults and children with CF. The group is held in Spanish and facilitated by Marilyn Calderon, LICSW. For more information and to register, click here.
Find out more »Cystic Fibrosis Research Institute’s Online Support Group for Adults with CF
Online Support Group for Adults with CF July 18th, 2022 CFRI provides a monthly Online Support Group for Adults with CF, which is open to participants nationwide. The group is facilitated by a social worker well versed in issues facing adults with CF. The group meets on the third Monday of every month, from 6:00 pm PST to 7:30 pm (9:00 pm – 10:30 pm EST). To participate, please send an email to CFRI to request the registration link. Please allow 3-4 hours before the…
Find out more »MS Views and News’ Monthly Virtual Pilates Class
Monthly Virtual Pilates Class Webcast July 18, 2022, 7-8PM ET Featuring instructor Bri Rhea, Pilates and Mindful Movement Instructor Click here to sign up.
Find out more »Cystic Fibrosis Research Institute’s CF Caregivers Support Groups
CF Caregivers Support Groups July 19, 2022 CFRI provides a monthly CF Caregivers Support Group, which is open to participants nationwide. The groups are facilitated by a social worker well versed in issues facing CF caregivers. Participants are able to participate in person, as well as join anywhere from the country by telephone. Two groups to choose from: Parents of children with CF: 5:00 pm – 6:00 pm PST Parents/Spouses/Partners of Adults with CF: 6:00 pm – 7:00 pm PST To…
Find out more »Cystic Fibrosis Research Institute’s Navigating Grief to Growth: Bereavement Support Group
Navigating Grief to Growth: Bereavement Support Group July 19th, 2022 A discussion and support group for those who have lost a loved one to CF, whether recently or in the past. Led by Isabel Stenzel Byrnes, LCSW, MPH, a grief counselor who also lives with CF, the group provides a safe place to engage in focused practices to help experience growth in coping with the loss of a loved one. Each meeting has a different topic but there will also…
Find out more »Cystic Fibrosis Research Institute’s Post-Transplant Support Group for Adults with CF
Post-Transplant Support Group for Adults with CF July 27, 2022 This support group addresses the unique issues faced by those with CF who have received a double lung transplant and is open to post-transplant CF adults only. The group is facilitated by Sonya Haggett, LCSW, a licensed clinical social worker who has CF and is a double lung transplant recipient. To register, click here. You will only have to register once to attend any meeting.
Find out more »Cystic Fibrosis Research Institute’s Online Support Group for Teens with CF
Online Support Group for Teens with CF July 20th, 2022 This monthly group addresses the unique issues faced by teenagers between the ages of 13 and 18 growing up with CF. The peer-to-peer support group is facilitated by Teresa Priestley, MSW, and Deborah Menet, LCSW, social workers at the Stanford CF Center. Parents must provide consent for their teenagers to attend. For more information and to register, click here.
Find out more »The MDS Foundation’s 2022 Webinars: Living With Chronic Fatigue: I’m Not Just Tired
Webinar: Living With Chronic Fatigue: I'm Not Just Tired July 23, 2022 with Brandi Reeves, MD; Lineberger Comprehensive Cancer Center, UNC-Chapel Hill School of Medicine, Chapel Hill, NC Attend this webinar to learn about the challenges of chronic fatigue, the most common symptom of MDS. In addition, learn about blood transfusion pros and cons, as well as the complications of transfusion dependency. To register, click here.
Find out more »Cystic Fibrosis Research Institute’s 35th Virtual National CF Education Conference
CFRI's 35th Virtual National CF Education Conference: Focus on the Future July 29-31, 2022 CFRI’s National CF Education Conference brings together the national and international cystic fibrosis community for a virtual weekend of content and connection. Nationally-renowned presenters will address subjects that are vital to the CF community. Hear from CFRI-funded researchers on innovative CF research, visit pharmaceutical & medical technology exhibits, and attend support groups and workshops. Socialize with members of the global CF community and honor CF heroes at…
Find out more »August 2022
The Oley Foundation’s Walk, Bike, or Move for Oley! Walkathon
Walk, Bike, or Move for Oley! Walkathon 2022 August-October 2022 Once again, our annual walkathon will be virtual. This year, though, we urge you to gather in your communities—as you are comfortable—and walk, run, bike, hike, or be active in any way you'd like, for as far and as long as you choose! Let us know you are walking and whether you'd like our help in reaching other Oley members in your area. We can help you spread the word! Donations…
Find out more »MS Views and News’ Monthly Virtual Pilates Class
Monthly Virtual Pilates Class Webcast August 1, 2022, 7-8PM ET Featuring instructor Bri Rhea, Pilates and Mindful Movement Instructor Click here to sign up.
Find out more »The Center for Chronic Illness Web-Based Rare Chronic Illness Support Group
Web-Based Rare Chronic Illness Support Group A peer support group for those living with rare health challenges led by Kerry Heckman, MSW, LICSW 1st Tuesday of each month, 4-5pm PST / 7-8pm EST To sign up for free, visit www.supportgroupscentral.com/CCI
Find out more »Alport Syndrome Foundation’s Alport Connect 2022 (virtual)
Alport Connect 2022 August 6-7, 2022 Two days of ALL NEW live, interactive discussions and connection opportunities featuring Alport syndrome patients, medical experts, and researchers. All Alport Connect 2022 content will be accessible in the ASF Community app. Current app users MUST get tickets to the Alport Connect 2022 in order to unlock the content and should register for the 2022 event with their current email log-in address, if possible, for ease of use. ASF will also provide a series of pre-recorded educational videos to…
Find out more »CureDuchenne’s Live Workshop in Little Rock, AR
CureDuchenne Live Workshop August 6, 2022 Little Rock, AR A FULL DAY EVENT FOCUSED ON IMPROVING THE QUALITY OF LIFE FOR INDIVIDUALS WITH DUCHENNE. CureDuchenne Cares is an interactive education and outreach program designed to provide the community with information, resources and best practices for managing the challenges of Duchenne to help improve overall quality of life. A full day of presentations on standards of care, family support, research/clinical trials, physical therapy, and medical equipment To register, click here.
Find out more »The Center for Chronic Illness: Parenting Chronic Illness Webinar
Parenting Chronic Illness Webinar A web-based peer support group for parents of children living with health challenges led by Natalie Hopkins, MSW 2nd Monday of each month from 4-5pm This program is currently meeting virtually. To sign up, visit www.supportgroupscentral.com/CCI
Find out more »The Center for Chronic Illness WA State Rare Chronic Illness Support Group
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!
Find out more »Burning Nights’ Online CRPS Support Group
Online CRPS Support Group August 17, 2022 Join Burning Nights CRPS Support for our next online (CRPS) peer support group on Wednesday 17 August 2022. Our online peer support groups are for anyone affected by CRPS such as patients, relatives, friends, partners or carers. These take place once a month. Our next online CRPS support group is being held on WEDNESDAY 17 AUGUST 2022 starting at 2:00 pm British Summer Time (UK Summer Time). To register, click here.
Find out more »HCU Network America’s Classical HCU Parent-Caregiver Online Meetup
Classical HCU Parent-Caregiver Online Meetup August 20, 2022 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether your child is 5 months old or 25 years old, parents, grandparents, and caregivers of those with HCU need support! Come join us for networking, tips, tricks, and conversation. To sign up, click here.
Find out more »HCU Network America’s Cobalamin Disorders Virtual Meet-Up
Cobalamin Disorders with Homocystinuria Meetup August 20, 2022 Online meet-ups are an opportunity to connect with patients and caregivers impacted by cobalamin disorders with elevations of homocysteine to one another virtually. If you are a medical professional or industry representative looking to attend, please contact HCU Network America to seek advanced approval. To sign up, click here.
Find out more »HCU Network America’s Classical HCU Virtual Meet-Up
Classical HCU Virtual Meet-Up August 21, 2022 Meetups are an opportunity to connect patients and caregivers impacted by Classical Homocystinuria to one another virtually. About this event Struggling with the diet and formula? Feeling like you are in a food rut, don’t like your formula, or you are having trouble getting it covered? Having health issues, you aren’t sure are HCU related, or just part of being an adult? Come join us for our Classical HCU Community Meetup. Click here…
Find out more »September 2022
HCU Network America’s HCU Heroes Race for Research
HCU Heroes Race for Research September 1-30, 2022 Set with the participants convenience, geography and their pace in mind, in 2019 our first race launched with just 14 participants and raising just over $4,000. Since then our HCU Race for Research has raised over $45,000 for homocystinuria research and last year had 147 participants! These races are convenient, fun and competitive way to support the efforts of HCU Network America (HCUNA). We sincerely appreciate your support for this event and…
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