Episode 17 Time to Step Up ABC, Make It Right

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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.

NORD

Jay’s Petition – please sign!

Hemo Friends – Private Facebook Group, but you may request to be added, if affected

Patrick’s Open Letter

HFA

NHF

Hollywood Health Society

History Channel – Houdini

Patricks Page

Jays Page

Infuzer

Stand Up for Hemophilia

Call to Action:

sign Jay’s petition

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:

Progressive Insurance FaceBook
Apple (i-watch)    Twitter
Little Caesar’s  Facebook   Twitter
Chase  Facebook   Twitter
T-Mobile  Facebook   Twitter
Lipton Sparkling Tea  Facebook   Twitter
Nasacort
Staples  Facebook   Twitter
Subaru  Facebook   Twitter
Ford  Facebook   Twitter
Candy Crush Soda  Facebook   Twitter
PA Lottery     Twitter
milklife.com     Twitter
Chantix  a Phizer drug
Zyrtec  Facebook   Twitter
Verizon  Facebook   Twitter
Rimmel-Wonder Lash Mascara  Facebook   Twitter
Bleu de Chanel from Macy’s
GMC  Facebook   Twitter
Walgreens  Facebook   Twitter
TJ Maxx   Facebook   Twitter
Nissan  Facebook   Twitter
Volkswagon  Facebook
Raymor and Flanagan
Beggin Strips    Twitter

ABC Family Network Facebook  Twitter

Secrets and Lies Facebook  Twitter

Ben Sherwood, President of Disney ABC Television Group  Twitter

If anyone had any others, from other regions,  please send to me and I will update

 

 

Episode 16 My New BFF Heather

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.

Mentioned on the Pod:

Rare Disease Day

Hemophilia  Council of California

Contact Heather:

Heather’s email

 

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!

 

 

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

 

Nurse Jane Episode 7

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.

Mentioned on the Pod:

Disneyland

Swimming!

Laurie Kelley Communications

Save One Life and Waves of Compassion

Aquatics Therapy

Inhibitors

Baxter, CSL Behring, Bayer, Phizer 

CHLA and CHOC

There Is More To Life and Hemophilia A

Get 10$ for the survey: Identification of Patient/Parent Mentors & Other Preferred Resources in Bleeding Disorders: Survey Responses Needed…KOLComm, a market research company based in New Jersey, is requesting your help in completing a 10 minute survey. All survey takers will be paid $10.00 for completing the survey in full. The purpose of this study is to understand the challenges of living with bleeding disorders and how patients and parents support each other.

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!)

If you want more Jane, head over to her Facebook page!

Thanks again Jane! See you soon 🙂