Warning: Matti let’s some colorful language out – all in the spirit of fun. It’s all jokes people. Jokes and ear muffs. That being said, you know I love me some Patrick James Lynch. I am just so impressed by how articulate, intelligent, talented, hilarious and NICE this guy is. I am so psyched that he is in L.A. now (except, he is never in L.A) and we have the opportunity to collaborate and support each other and the community. So, we decided to do a regular segment each month and just catch up on what he has going on, because it is fun to talk about Hemos, Powering Though projects, High Bars, Documentaries, Scoops, Scoop and a half – whatever it takes, Patrick’s insane cussing problem, post it obsession, paper planners and figuring out a name for this new series of Shoot The HooHa.
I seriously love Ryanne! She is so honest, beautiful, smart, I love her accent and I just want to be her BFF. She started the Hemophilia Is For Girls blog to help her process her experiences. At first it was just for her and her journey, it turned into a resource and inspiration for others. Personally, she has been an inspiration for me, because she is so brave to start and continue her blog through very personal times. She is also very honest in her writing and you instantly can connect with her. After talking to her, I feel even more connected and on Team Ryanne!!
In Betweeisodes are now part of the programming here at HU. We will be doing quick catch ups with past guests, and giving letting you get to know everyone a little more. These are quickies. We will still do a longer chat with cool people in the community once a month, but people are asking for more, so we are starting with some quickies.
Rebecca from Episode One and I have become Hemo Besties (as seems to happen quickly in the community) and we are working on a lot of ‘stuff’ together. Here were are just catching up and talking about the dinner that we had – Thank you Bayer!!! -the BelieveDigi Powering Through Panel and the beginnings of a Hemo group run?
Powering through event from Believe Digi on Saturday! The fourth installment of the series which has been done all over the United States. Patrick and Believe Digi bring together people from the Hemo community as well as others in the fields of interest for all humans! Really excited to support Patrick and SO honored that he asked me to be a part. This guy has some fantastic ideas and I think I love all of them.
Candace is one of the coolest ladies I have ever met. She is fiercely intelligent, beautiful, a strong advocate and really knows her stuff. They are a military family and the ins and outs of getting proper care with base doctors is interesting and another example of how we all have different stories and experiences in this crazy bond of Hemophilia we have. Hemophilia runs in her family, but it wasn’t talked about when she was growing up. Even though she knew it ran in the family, she did not know that it was a possibility that her kids may have Hemophilia. The family history and story of her finding out how Hemophilia may affect her is so interesting. I actually learned so much from this chat. Her youngest has Hemophilia B, which is rare, and he is a bleeder. This awesome mom fought to get her child on new medication because she is very aware and self educates. Lesson – keep fighting for your kids!!!!
After listening to Candace, I feel SO LUCKY with my son’s birth. We did not know there was any possibility of Hemophilia and I was in labor for 36 hours before we did a C-section. He could have had major head trauma, and thankfully, there was none. Candace’s boy had a LOT of bleeds when he was a a little guy and there were a LOT of E.R. visits. The family had to fight for the port, fight for the factor, fight for the correct meds and they continue to fight to do what is right for their kids.
She has a burrito stealing dog who talks throughout the episode, so you will come to love this pup as well as Candace.
I feel so blessed to have met Vaughn. What an inspiration! His energy, outlook and story are amazing. He is a triathlete, published author, blogger, speaker, musician and inspiration to many. He is a “Hemo-lebrity” in our community and I could talk to this guy all day. I was so energized after our chat and I am so excited to see what he does next.
I really appreciate Vaughn’s honesty, bravery and authenticity. He is so comfortable in his own skin and not only is he an inspiration to hemophiliacs and HIV affected people, he is an inspiration to just plain old people. I know you will enjoy hearing from Vaughn and will want to get in the gym and start strengthening up your muscles, be an engaged parent, make the most of your 16 hours, eat better and just BE better. I love this guy and I need him in my life, so will you after this.
I can’t believe Barry was so kind to let us peek into his world with an interview for Hemos Unite! This is a pretty cool guy, he has made me a super fan and I am buying everything he has created. Literally.
This is a great chat, not necessarily about Hemophilia, but more about this smart, entertaining, accomplished writer and his work. He has written the widly popular Young Adult fiction books, the I Hunt Killers series. There are several short stories to satiate the hungry fan as well. One of them, Blood Boy, is a portion of Howie’s story. Howie is the Hemophiliac Side Kick to the main character, Jazz. What is incredibly unique about this e-book, besides an author giving his fans more through additional awesome content? For the rest of the year, all the proceeds from Blood Boy will go to the Adam Lynch Award. How cool is that? I am also gifting out 10 copies of Blood Boy to the first 10 reviews on iTunes or comments here on the website.
So excited about this lovely guest! The creator of the popular Facebook page Hemophilia Mother, Milena was so cool to talk to. She is just so wonderful and really making a difference out there. You are going to really enjoy this amazing woman. She is heavily involved in the community and is focusing on how to help the world. She mentions that 60% of Hemophiliacs around the world are not receiving treatment. Can you believe that? I know we struggle here in the states because factor and the care is outrageously expensive, but at least we can get the medication. So what can we do to help all of our hemo families? Get involved.
Jane has some amazing stories about her experiences (and foreshadowing) with Hemophilia and has the coolest kids on the planet. She has lived a very interesting life and has taught me a lot and given me a of of ideas. The differences in how the community was and how it is now is so different, some good, some bad, but she gives us some great ideas on how to bring the community closer together.
There is a little background notice on this recording so bear with us, this is great content.
Great thoughts from Jane: Get a Master – find an HTC or doctor that you trust and utilize them. Every trial and hard time happens for a reason and we are all better for it (EVERYone can benefit from this outlook!)