Living with a condition like Osteonecrosis can be challenging, and connecting with organizations like the Osteonecrosis Foundation can offer vital support and information. However, for many of us, including myself, this experience can be fraught with disappointment. Since my diagnosis in 2014, I’ve had my share of frustrations with the Osteonecrosis Foundation, and in this blog post, I’d like to share my thoughts and concerns.
The Disappointing Disconnect
My journey with Osteonecrosis started in 2014, and as I sought guidance and information, I naturally turned to the Osteonecrosis Foundation. I had high hopes for the support they could provide, but sadly, my experience has left me disheartened.
- Outdated Information: One of my primary grievances is the outdated information provided on the foundation’s website. In my personal opinion, this is a major letdown. To be an effective resource for individuals living with Osteonecrosis, it’s essential to keep the information current and relevant. It’s frustrating to find resources that seem to belong to another era, and this can lead to misinformation and confusion. You have support group links to several that are not even available, I called you at least 8 times and gave you this information and also gave you my support group and you still didn’t change your website to correct info.
- Lack of Response: I reached out to the Osteonecrosis Foundation with enthusiasm, expressing my desire to volunteer and become an active member. Despite my best efforts, I never received a single response. It’s disheartening to be willing to contribute your time and energy to a cause you’re passionate about, only to be met with silence.
- Membership Neglect: Becoming a member of the Osteonecrosis Foundation should come with some level of engagement and acknowledgement. Unfortunately, I never received so much as a membership card or even an acknowledgment email. When people are investing in an organization, especially one dealing with medical conditions, a sense of belonging and support is vital.
- Lack of Progress: The foundation informed me about ongoing website updates that have been perpetually “in progress” for years. However, from my perspective, these updates are scarcely noticeable. In the digital age, maintaining an up-to-date website should be a fundamental priority, especially for an organization like this.
- Missed Opportunities for Involvement: I offered my assistance in updating the website and helping in any way I could, but regrettably, no one ever got back to me. It’s disheartening to see a passionate community member’s willingness to contribute ignored.
- I asked them to adopt my ribbon, help me get Osteonecrosis awareness day for November 29 as several states have recognized this date and I am trying to have it known and recognized nationally. Was told they would get back to me, never have.
- Those living with AVN we don’t want to be under a rare umbrella ribbon we wanted our own. We request that you please stop doing nothing and get on board with those who want to volunteer and be a part of your foundation.
A Call to Action
To the board members and decision-makers of the Osteonecrosis Foundation, I implore you to consider the frustrations of individuals like me who desire to see change. Your organization holds the potential to be a lifeline for those living with Osteonecrosis, but to achieve that, it needs to adapt and evolve.
- Commit to getting Current Information: Regularly update your website and ensure that the information provided is not just accurate but also reflects the latest advancements in the field.including trials and engagement with those living with Avn that may have been helped with other methods.
- Engage with Members: Recognize and appreciate your members by offering them a sense of belonging, acknowledgment, and involvement in your mission.
- Transparency: If there are challenges with website updates or resource availability, communicate them openly with your community and set realistic timelines for resolving these issues.
- Volunteer Engagement: When people offer their help, be responsive and open to their contributions. Volunteers can be the lifeblood of an organization.
My intention is not to criticize but to advocate for positive change. The Osteonecrosis Foundation has the potential to be a beacon of hope for those living with this condition. Let’s work together to ensure that hope is realized, that information is current, and that everyone affected by Osteonecrosis receives the support they deserve.
If you or anyone needs a support group for Osteonecrosis or Legg Calve Perthes here are links to some that are current
Joint Purpose 