Episode 15 Leadership Internship Opportunity with Bayer

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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!

Thanks Matt!!!!

Contact Matt:

Email

contact me if you want Matt’s phone number – I decided to not broadcast that, but I am happy to give that to you if you are interested in learning more.

Episode 14 Shoot The HooHaa with Patrick James Lynch

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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.

Patrick likes Post Its – send him some!

My Planner- my life in colors

Powering Through at Solar Studios

Patrick Droney

National Cornerstone HealthCare Services

Hemophilia Foundation of Northern California

Hobonichi

Stop the Bleeding

 

 

 

 

 

Episode 13 Ryanne

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!!

Send a CHLA Valentine

Hemophilia Foundation of Southern California FB page

Severe Factor 5 Hemophilia

Ryanne’s Blog

Red Band Society

Canadian Hemophilia Society

Code Rouge

Victory For Women

More Ryanne:

hemophiliaisforgirls@blogspot.com

Ryanne Tweets!

email her!

Hemophilia is for Girls FB Group

Factor 5 Deficiency FB Group

Thank you again Ryanne! Y ou are fantastic!

 

 

Episode 12 Catch Up with Rebecca From Episode One!

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?

RSVP for the Los Angeles Zoo trip with us on Feb. 3 via comments, twitter or Facebook

RSVP to the next Hemo Moms Unite Dinner in Rancho Cucamonga via comments, Twitter or Facebook

Leave a comment below if you want to join some group exercise activities!

InBetweenisode 11.5 with Patrick James Lynch

NCHS PT SoCal short link

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.

Joel Stein and his Theme Song

Solar Studios

To Register for the FREE Event

Rebecca Berenson

Patrick Droney

PJLynch’s Twittah 

Stop the Bleeding FB

Matti Vann

 

Episode 11 Candace Clifford

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.

Mentioned in the pod:

Hemo Moms Unite Dinner

Powering Through Event on Jan 17 Registration

Joel Stein

Hemophilia B

BeneFix

Hemophilia in the 1950s

Dr. Marion Koerper PED/ONC UCSF Medical Center

Dr. Courtney Thornburg, Rady Children’s Hospital 

Factor Support Network and Randy Desantis thanks for introducing us Randy!

504 Plan

PSI  – I Love PSI!

 

To get in contact with Candace:

clifford02@gmail.com

 

Episode 10 Vaughn Ripley

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.

Mentioned in the Pod:

Barry Haarde

Men’s Health Cover Battle on Fox5

Noah Galloway

NSPA

Vaughn’s Video and Survival Pie

Kaizen

 

More Vaughn!!

Vaughn on Facebook, personal page

Vaughn’s Author page on Facebook

VaughnRipley.com

Vaughn’s Tweets @VRipley send him a tweet about hearing him here!

Vaughn’s LinkedIn

Vaughn’s YouTube

Buy the Book!!!!

Episode 9 New York Times Bestseller Barry Lyga!

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.

Mentioned on the pod:

Baxter Event from Randy (805)402-5952

Awesome Event for Hemos Unite!

Season 4 Stop The Bleeding

The Astonishing Adventures of Fan Boy and Goth Girl

Patrick James Lynch and Believe Digi

Blood Boy

HANY

Adam Lynch Award

Hollywood 

UnSould

4th Book In Barry’s I Hunt Killers Series

Vaughn Ripley

 

More Barry Lyga:

Barrylyga.com

Barry’s Twitter

Barry’s Facebook

Tumblr

 

Get the books! Local Independent Bookstores, Barnes and Noble – I am hooked!

Hemophilia Mother Episode 8

Surpise! An extra podcast this month!!

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.

Mentioned on the pod:

Hemophilia Mother on FB

Canadian Hemophilia Society

World Federation of Hemophilia 

 Hemaware

Find More Milena on her Hemophilia Mother Facebook page!

Thank you Milena, you are a such a beautiful person!!!!!