Kevin Schaefer posted a new activity comment 1 year ago
Hey George, welcome! @cazandra-campos-macdonald is our main moderator, but let either of us know if you have any questions.
Kevin Schaefer posted a new activity comment 1 year, 4 months ago
Hey Dave, welcome! My name is Kevin. Caz is our main moderator, but I help out as well. Please reach out if you have any questions. Thanks!
Kevin Schaefer started the topic News: Regular MRI Scans May Help Assess Joint Damage Risk in Hemophilia A in the forum Hemophilia Treatment 1 year, 4 months ago
According to a Canadian study, preventive treatment with FVIII was not fully effective at preventing MRI-detected joint changes in boys with severe Hemophilia A. Instead, regular MRI scans or ultrasounds may help assess joint damage risk in these patients.
Read about this on our main website here.
Do you have any thoughts regarding this study?
Kevin Schaefer started the topic Columnist Writes About Son's New Pain in the forum Parents and Caregivers 1 year, 4 months ago
Columnist Joe MacDonald writes about a new type of pain his son is dealing with. Though being on recombinant factor VIII was working to treat his hemophilia, his son’s internal bleeding resulted in joint pain. Joe writes about how hard it is to watch his son go through this, and how their medical team is working to find a s…[Read more]
Kevin Schaefer started the topic News: Implanting 3D Bioscaffolds in Rats Works to Trigger FVIII Production in the forum Hemophilia Treatment 1 year, 4 months ago
A study shows that implanting 3D bioscaffolds in rats works to trigger FVIII production. These are 3D biological scaffolds made up of collagen and other molecules. The goal is to develop an alternative treatment option to FVIII replacement therapy, a current standard of care treatment for hemophilia A. Read the full story on our main website…[Read more]
Kevin Schaefer started the topic Trying to Let Go of Past Struggles in the forum Parents and Caregivers 1 year, 5 months ago
Columnist Caz MacDonald writes about trying to let go of reminders of past struggles. As the health of her sons has improved, her family’s medical cabinets have gradually become smaller. For her, she sometimes struggles to let go of the hard times.
Here’s an excerpt: “For whatever reason, the drawers remind me of old times that aren’t neces…[Read more]
Kevin Schaefer started the topic New Home, New Opportunities in the forum Living with Hemophilia 1 year, 5 months ago
Columnist Alliah Czarielle writes about moving into a new home with her husband, and the pros and cons that come with this transition. Read her column here.
Here’s an excerpt: “Life in our old place was convenient, and we’re thankful for the comforts we had back then. But as we got older, we wanted to learn how to do things on our own. Yet…[Read more]
Kevin Schaefer started the topic Finding Joy With Hemophilia in the forum Parents and Caregivers 1 year, 5 months ago
In his latest column, Joe MacDonald writes about finding joy in the midst of hardships. He reminisces about a balloon festival he went to with his family years ago. This was when his son was starting to deal with more physical limitations, due to his hemophilia. Nonetheless, he wanted his son to have fulfilling experiences in spite of the…[Read more]
Kevin Schaefer started the topic Rare Disease Documentary in Kickstarter Campaign to Raise $45K by Oct. 28 in the forum Living with Hemophilia 1 year, 5 months ago
A Kickstarter campaign for the film “Rare” is running through October 28th. This documentary provides a “glimpse into the world of rare diseases and the unsung heroes that are pushing for medical breakthroughs,” Kickstarter stated on its campaign page.
This looks like it will be a great film to highlight a broad spectrum of rare dis…[Read more]
Kevin Schaefer started the topic National Disability Employment Awareness Month in the forum Living with Hemophilia 1 year, 5 months ago
October is recognized in the United States as National Disability Employment Awareness Month (NDEAM). This is to raise awareness of issues related to disability and employment. Even with the Americans with Disabilities Act of 1990, many disabled individuals still face discrimination and other obstacles related to employment.
This year’s t…[Read more]
Kevin Schaefer started the topic A Reminder That No One Is Perfect When Treating a Chronic Illness in the forum Parents and Caregivers 1 year, 6 months ago
In his latest column, Joe MacDonald writes about extending grace to himself and others in rare disease communities. He shares stories about being hard on himself when he made mistakes caring for his son, such as waiting too long to take him to the hospital. Ultimately though, he has come to recognize the importance of giving himself and others…[Read more]
Kevin Schaefer started the topic NORD Rare Disease Summit Open for Registration in the forum Living with Hemophilia 1 year, 6 months ago
Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. This event is hosted by the National Organization for Rare Disorders (NORD), and it focuses on bringing together people from different rare disease communities.
Participants will have the opportunity to ne…[Read more]
Kevin Schaefer started the topic Banking on Radical Acceptance to Reach the Next Step in Life in the forum Living with Hemophilia 1 year, 6 months ago
In her latest column, Alliah writes about how her goals in life have evolved. Her 10-year-old self dreamed of owning a credit card, while her adult self focused on raising a family. She illustrates how the evolution of her dreams coincides with her life with her husband, who has Hemophilia.
Here’s an excerpt: “The way out seems ironic at f…[Read more]
Kevin Schaefer started the topic Staying on Top of Treatments with Calendars and Notifications in the forum Parents and Caregivers 1 year, 7 months ago
In her latest column, Caz writes about how using calendars and phone notifications help her keep track of her son’s treatments. She details her son’s treatment journey, and how these strategies allow her and her husband to stay on top of medical affairs.
Here’s an excerpt: “I depend on electronics for communicating and keeping track of ca…[Read more]
Kevin Schaefer changed their profile picture 1 year, 7 months ago
Kevin Schaefer started the topic 2021 Global Genes’ RARE Patient Advocacy Summit: Register Today in the forum Living with Hemophilia 1 year, 7 months ago
Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be live-streamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego.
This conference provides people in rare disease communities a chance to connect with each other and shar…[Read more]
Kevin Schaefer started the topic Using our Forums in the forum Using our forums 2 years, 6 months ago
Hi everyone! My name is Kevin Schaefer, and I’m the Forums Director for this site’s parent company. Your forum moderators are Shellye Horowitz and Carrie Recker.
For those of you who have visited, registered and contributed to topics on the new Hemophilia News forums, thank you! As a member of this online community, you are helping to cre…[Read more]