Looking for board members for a nonprofit
I have a podcast called rare connection, I am trying to turn it into a nonprofit. With my podcast I am connecting people with the same or similar conditions, educating medical professionals and the general public and trying to find clinical trials for the 95% of rare conditions that have no FDA approved treatment.
I am part of a clinical trial for my own condition Homocystinuria (HCU). I also have some companies that have contacted me about being on my podcast that are doing clinical trials. I have connected many rare disease patients mostly with the same condition both through Facebook and through e-mail. Every episode educates on a different rare condition. I am always looking for guests also, but I can't take anyone until July because of a conference I am going to.
I need 3 board members in order to file for the 501c3 through the IRS. Board members will help with the bylaws, fundraising and if I can find someone who is good with accounting or web design it would be a huge help. Since this is a brand new nonprofit I can't pay anyone right now. Board members are also part of the decision making process of anyone that is hired and the budget. If this sounds like something you are interested in please let me know. I may hire someone later on, but right now I just need some volunteers to help out.
Thanks
For those who didn’t see my channel on YouTube is called rare chef. My podcast is available both in video format and audio. I go through Buzzsprout’s for the audio. I am monetized through buzzsprout so you may get get some ads. You can send fan mail through the link in the show notes. It goes to my phone as a text message. The video version is live and I have my phone on do not disturb during the podcast so you might want to wait till after the show is over. I post the audio version after the live version so if you are listening to the audio feel free to text anytime. Please be kind to each other and the guests if you are watching the live or I will block comments on the live. I have had to do it before and send out apologies to the guests that were offended.
I'd love to learn more about how you started your rare disease podcast. That's something that I've considered doing, but I get so confused when I start researching where to start. Warmly, Tatiana (raredisease.net Team member) I am using podcast guest to find guests and Facebook groups. Nord is great for looking up rare diseases. Facebook has a group for just about everything. I also research my guests. They have almost always been on another podcast. My podcast used to be called nutrition equity after the medical nutrition equity act. My goal was to talk to at least one person from every covered condition. I continue to advocate for that bill which has been reintroduced into the house, but we now need a senate republican. E are having bad luck with republicans. I will still take people from that bill, but I have now expanded to all rare conditions. I have found that most don’t know what rare is though. This is kind of like a talk show. A lot of my guests are trying to promote a book. When I hit 100 subs I had book deals with 2 of my guests, but no takers. I leave links to where they can get the books though. Most of them are on Amazon, and I am an influencer. I would love to have you as a board member if you are up to it.
Wow, this is so exciting! I hope you are able to find the members needed to start up this nonprofit. It sounds like you could do a lot of good. What kind of conference are you attending? Is it rare disease related? I'd love to check out your podcast. I live with the rare disease that is narcolepsy, and we have a handful of FDA-approved treatments but not many. And many come along with heavy side effects. And are all SO EXPENSIVE. Getting insurance companies to cover rare disease medications is so difficult because of the increased prices associated with rare disease pharmaceuticals. I think this would be a great podcast topic to bring up, if you're interested! I actually wrote an article on fighting for rare disease medication coverage, which can be found here: https://raredisease.net/living/insurance-medication-coverage Best of luck to you on this amazing endeavor! I can't wait to see what you do! And remember ... slow and steady wins the race. Please don't get discouraged if it doesn't all just happen at once! What matters is that you do not give up. Warmest regards, Tatiana (raredisease.net Team Member) the conference I am going to is one for my own rare condition Homocystinuria (HCU). It is a great networking opportunity. I am in a clinical trial now and the company I am doing the clinical trial with Travere Therapeutics will be here. Lots of other vendors will be here also as well as others with the 3 types of Homocystinuria and their families. I hear you on the high price of drugs. Try take advantage of is being rare, but I am just happy to have treatment. 95%of rare conditions don’t have any FDA approved treatment, so consider yourself lucky to be in the 5% that does. I am hitting a brick wall with board members though. That is why I came here. I want a rare disease patient or caregiver to do this. Others don’t understand what we are going through.
I don't know how to edit the post, but all qualifications aren't necessary, but just preferred. Their are some websites that I can build that don't require code.
, If you click on the 3 dots under your post, on the right-hand side, you have the option to edit or delete your post. - Warmly, Donna (Team Member) thanks
