What Is Going On In June

Stuff going on in June:

 

Novo has a COOL opportunity for Hemos ages 16-25, hear more on the Podcast out SOON, but check out the Link for a chance to get a leg up on LIFE from expert Jeffery Leiken who teamed up with Novo Nordisk! Deadline to apply is end of June so HURRY!!!!!

Biogen is doing some Education Dinners about their products for the Hemo World – so check them out if you have questions:

Eloctate Info:

Friday, June 12: La Traviata 301 N Cedar Ave., Long Beach, CA    Speaker: Dr. Quon

RSVP to Maria Perez 323.236.1257 or maria@bioigen.com

ELO Friday June 12 (1)

 

Saturday, June 20: Maggiano’s Little Italy 189 the Grove Dr., LA, CA   Speaker: Claudia MacKaron, RN

RSVP to Jessica Klass 626.238.0244 or jessica.klass@bioigen.com

ELO Saturday  June 20

 

Alprolrolix Info:

Friday, June 19: Maggiano’s Little Italy 189 the Grove Dr., LA, CA   Speaker:  Robert Miller, PA

RSVP to Jessica Klass 626.238.0244 or jessica.klass@bioigen.com

ALP Friday June 19

 

 

Of course our Braving Change Event with Biogen on Sunday June 28 at Hotel Irvine:

braving change

 

Episode 20 Giovanny Pernudi

Gios new photo

Giovanni is so passionate. He is affected by hemophilia and is heavily vested in the  community and making it stronger.  I am fortunate to have met and learned more about him this year and I am genuinely impressed with how knowledgeable and helpful he is. This guy has some great ideas about the future of California and I see him making a great impact on the future of hemophilia/bleeding disorders as a whole. I really admire how much he does to support the community. Thanks for giving back Gio!

 

You will hear how much he cares about ensuring our kids are being supported and respected as the future leaders of our community. Maybe after hearing him you will want to volunteer for the camps or just put yourself out there for someone who needs it.

Gio’s quote when I asked him for one for the pod…its a good one

“He who is not courageous enough to take risks will accomplish nothing in life” – Muhammad Ali

 

Mentioned on the Pod:

Leg Day

Hemophilia Council of California

Arizona Hemophilia Association Youth Program

Hemophilia Alliance of Orange County

Arizona Camp

Northern California Camp

SoCal Foundation Camp

SoCal Family Retreat

Baxter

San Diego Chapter

NHF Washington Days

 

Talk to Gio:

His Facebook Page

Gio’s email

or call him – he said I could plaster his number all over – but reach out to his FB page or text/call me and I will give his number to you. Since this goes out the the general population, you can see how I would like to have a tiny bit of privacy for him.

 

This podcast is generously sponsored by bryanmichaeldesign.com. Bryan is a freelance graphic designer, photographer and videographer working in Ventura County. His goal is to connect people and inspire ideas onto paper or film. Visit bryanmichaeldesign.com and make your next project a creative solution. Thanks Bryan!

 

 

 

Episode 19 Beau Reinegger!

This guy is AWESOME. He was born a country boy and grew up on a cattle ranch (my dream is to live out in the middle of nature and have a retreat for all my friends to come together) and was misdiagnosed as a child. He did get the correct diagnosis (thankfully) early on and grew up with amazing mentors to lean on. He learned how to channel his emotions and anger to do something positive and take on life with gusto.

He encourages those of us with struggles to reach out. Reach out to him, to the Facebook groups, anywhere you can to make a connection. It is a small world and the guys that have been through it want to help you. I encourage you all to register for Beau’s HF Adventure Connections program. This is awesome.  Check out the links for pictures to see all the fun you will have.

Val Bias

Disabled Adventure Outfitters

HF Healthcare

HF Adventure Connections

Nate Slack

Contact Beau:

FB Page

HF Adventure Connections

Beau’s Personal FB Page

Thank you Sarah Shotts from LoveLetterToAdventure,com  for sponsoring this pod! Sarah is truly an inspirational woman who encourages women to find the adventure in the everyday.

 

Episode 18 Christa and The Female Factor

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.

Northern California Chapter Facebook Page

Email Christa

Thank you Jen & Company for sponsoring the podcast! Jen and Company empowers women and girls to live a life more awesome. Check out the site and tell her Hemos Unite sent you!

 

 

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!

 

 

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!