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?
The feedback from these small dinners has been incredible. Moms getting together, learning more about each other, gathering strength, and changing our community for the better seems to be just what (SoCal at least) has been missing. We hear you moms!
The next dinner will be Thursday Feb. 12, 2015 at 6 pm. Restaurant TBA at RSVP via HU! Twitter, HU! FB or in the comment section here. 15 person limit. 11 spots left. Please RSVP before Tuesday Feb. 10.
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.
PJ Lynch and BelieveDigi is at it again! So excited to be a part of this event. The info, directly from Patrick:
On Saturday, January 17th @ 1pm, Believe Digi & National Cornerstone Healthcare Services will present the first Powering Through event in Southern California, and we’ve got an INCREDIBLE day of food, interactive exhibits, and a panel conversation lined up for you and your family!
Solar Studios (1601 S. Central Ave., Glendale, CA 91204)What: Food, interactiveexhibits, and a panel conversation with this event’s focus on bleeding disorders & entertainment, and we 4 incredible guests:
– Joel Stein, writer for Time Magazine
– Matti Vann, Podcaster and hemo mom
– Patrick Droney, musician and community member
– Rebecca Berenson, actor and hemo momCost:
Like I said, it’s FREE! Just click here to register: bitly.com/PTSoCalPowering Through is a free event open to the bleeding disorders community, focused oninspiring community members to face life’s challenges, overcome their obstacles (hemophilia or otherwise), and achieve!This event is available to all interested community members, their friends, and friends of the bleeding disorders community.
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.