Hemos Unite Podcast Episode 25 Dan The Man

Dan and I are virtual buddies. We met through Facebook a couple of years ago and have attempted a podcast before. Our first try, we ended up chatting for almost 4 hours about everything under the sun. I was just fascinated about the exciting life he has created for himself.

Dan is from the States and moved to Japan several years ago. He is a soccer correspondent, amazing photographer, mosh pitter, and soon to married (yay!) with a witty and intelligent mind.

On today’s podcast, we chatted about the difference in Japanese and American bleeding disorder cultures, new drug trial and possible outcomes of the communities with all the potential of the new drugs and treatments on the horizon.

As a mom, I listened to him, and hoped that my son would have as much confidence and independence one day. As a friend, I listened to him and was grateful that we were brought together through our experiences with Hemophilia.

You can find Dan here:

Dan on Twitter

Dan’s Soccer Twitter

Big thanks to you, Dan. You are always such a joy to speak with. One of these days we will need to meet in person and raise a glass.  Looking forward to our next update.

Thanks again to Shire for sponsoring the podcast. If you want more information about the Co-Pay Assistance Program, go to HematologySupport.com

We’re Back! Season Two Starts Off With #Hemolife L.A. Aguayo Episode 24

 

Edited Thumbnail for youtube LA Aguayo

Boom Baby! We’re back with an awesome guest. This guy has an amazing story and after you listen to this podcast, make sure you go get the full experience and subscribe to his YouTube channel.

L.A. Aguayo has Hemophilia B and has overcome some dark days to emerge as a leader, inspiration, and role model for our community.  We talk Tinder, Gary Vee, Supplements, and YouTube on Episode 24.

It was truly an honor to have him on the podcast anda great way to kick off Season Two. Remember to subscribe via the annoying pop ups or the Hello Bar at the top of this page to get notified of the next podcast and to the Hemos Unite Playlist on YouTube for general Hemo Stuff happening in our little corner of the Hemo World.

Find L.A. Here:

Personal Facebook

Athlete Facebook

YouTube

Instagram

Email

Get Hemolife swag!!!

Send me some comments, I love to hear your stories and suggestions!

Episode 23 The AMAZING Amberly

@hemosunite (2)

You are going to fall in love with this amazing lady. Her hemophilia story is one that has changed so much from finding out the diagnosis and how it is managed today, you will love the growth and it will inspire you to take control of your situation.  She is amazing, inspiring, funny, smart and I am so thankful that hemophilia allowed me to meet her. You will learn some great life tips from listening to her on this pod.

She is inspiring as a business woman as well. She is the VP of Aida Cosmetics, which I now love – do you want to know why? Beacuse they help our community by teaming up and trying to help raise awareness for our community and their stuff looks AWESOME.

My favorite thing about Amberly is her outlook on life.  She thinks  so positively and you can just tell that she is a happy, aware, confident awesome lady.  She truly makes a concious effort to conquer the obstacles that are thrown at her. I just love her…have I said that already? She urges all new moms, everyone actually, to do your research, ask questions, make sure you are always learning and taking charge of your own life.  I know you will enjoy this pod and please leave a comment below to let us know how much!!!

Remeber to let me know if you will be joining us for dinner and some Hemo education at Roys in Pasadena on August 9th.

Links mentioned in pod:

Access Health Association 

Sweet Hill Cookies

Amberly’s Instagram

AidaCosmetics.com 

Chat with Amberly:

Amberly’s Instagram

viamberly@gmail.com

 

 

 

Episode 22 Renaissance Man Josh

I met Josh last year through Facebook and are working on a nice little friendship. He is quite possibly one of the nicest people I have ever met. He is so kind and knowledgeable and willing to give of his time and energy. He and his wife are very special people in my eyes. I gotta get her on the pod, by the way – she is a firecracker. Hi E!

josh episode 22

Josh was born in 81 is a a Severe A Hemophiliac. He lives life to the fullest every day. He has many hobbies, reptiles, snakes in particular, electronics, fire dancing, cars and the list goes on. Through his experience with his hobbies, he gives back to our community.  There is a deep wisdom that someone so young is in possession of.  I love it when he talks about what fear stems from when we are talking about the educational shows he does with snakes.

Bleeding Disorder Foundation of Washington

Camp I-Vy

Contact Josh:

His Facebook

or email Joah at pythonjosh@gmail.com

Episode 21 Jeffrey Leiken and HeroPath

I am thrilled to intoduce you to Jeffrey Leiken from Evolution Mentoring. This guy is a bad ass and I absolutely love his message and how he sees relationships and LIFE.  I was so excited that Novo Nordisk also saw how amazing he is and decided to bring his expertise to the hemophilia community. Jeffrey created HeroPath™  for his personal practice and created added benefit of a coaching program and tailored HeroPath™  just for us! HeroPath™  is an empowering program that offers life coach and peer support to help teens ages 16-19 and adults ages 20-25.

Copy of HeroPath Logo

Novo Nordisk and Jeffrey partnered up in 2014 and are continuing to grow the program this year. HeroPath™ focuses on helping participants grow their skills for success in many areas. It isn’t a self esteem “Peak Experience” rah – rah pump up and then no real take aways. This is the real deal. You can learn REAL skills you can apply to your real life. I wish I had something like this – you guys are so lucky! They added a Spanish speaking coaches and intrepreters for those of us who excel communicating in Spanish, expanded the age range and doubled the participant limit for 2015.

APPLY and if you are selected, you head off to the kickoff weekend in Philadelphia, PA, for an experience that can make a real difference in your life. You will need to enroll in NovoSecure first and then fill out the application.  the dealine is the last day of June 2015 for this year – so hurry up!

I encourage all people with any type of Hemophilia, ages of 16-25 who live in the United States to apply for this awesome opportunity. Just go for it – what if you change your whole life by just taking a chance on believing in yourself?

Jeffrey on YouTube talking about HeroPath last year

Evolution Mentoring

Novo Nordisk Programming

Application Process:

1st register for Novo Secure, then fill out the application, and good luck! Remember to do it now. The dealine is looming and you don’t want to miss out.

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!