I am so excited to introduce Christa to you all. Many of you in Northern California already know her and her family. She lost her father and stepped away from the community for a while. She became a mom and her son has hemophilia. She decided to come back and of course, she was welcomed back with open arms. She realized that she also had some concerns about her self care. So what is a mom to do when she grew up with an active awesome dad who helped the community, a son with Hemophilia and has some questions? Well…she starts a huge movement for women bleeders. She created The Female Factor, a group for women with questions and concerns for their own self care. Of course, what would any fierce mama do?! Can you tell – I like this woman? She is definitely part of my tribe. She saw a need and made something GREAT happen. You go Girl. Her enthusiasm is contagious and her loving nature shines through. You are going to want to reach through and hug her.
I decided to chat with Patrick about the irresponsible, ignorant comments made during the airing of the Secrets and Lies, a dramatic TV show by ABC studios. He is MUCH more eloquent than I, but we thought that I should put this out to the community to also gain some more global exposure. So our listeners out there in Australia, Turkey the U.K., etc, please feel free to help us.
Forgive the audio quality on this – our internet connection was terrible and I kept loosing Patrick and the audio.
Here is a list of some (east coast?) sponsors (from a post from a mom in our wonderful community – thank you!) you may contact, tweet and request they help in our call for apology. I suggest going through a direct message at first unless you are very respectful to the sponsors, as they absolutely do not know what is said suring a TV show and have no control over it. They do, however, have a voice and I am sure somewhere in this list of companies – someone knows someone with Hemophilia and can help us:
This lady is so cool. We met this year through Nurse Jane from Episode 7 and have become fast friends. She is a single mom with 5 kids and she is an awesome mom. I have seen this in person. She shares her story, “You Won A Free Trip To Hawaii”, which is a great title and the beginning of her journey with this rare disorder. She does so much and helps a lot of people in the community. I just love her. She is incredible, a master swimmer, a fantastic mom, a great friend and a true ray of sunshine for anyone who knows her.
I bugged my buddy Matt to come on and give us some details about the super cool Internship that Bayer is running. He went through the internship when he was in college and after hanging out with this guy for a while, I have heard him refer to this program as a great time in his life where he learned years of knowledge and grew professionally and personally. The deadline is coming up, March 13th. So head over and apply. Go. Now!
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.