Podcast Episode 27 Jessica From AZ

I met Jessica at an Arizona Hemophilia Association in the first month that we landed in Tucson. She worked for industry at the time and she was just so genuine, we instantly connected. She knows so many people in the community, it has been wonderful knowing I can call on her to introduce me to people or help me find a resource.

I personally like it when Hemo moms or Hemophiliacs work in industry. They get me. I am savvy enough to separate what they do for a living from who they are as a member of the community. I know there are some bad apples out there. So when you can find someone you connect with, no matter who they work for, try to work on the relationship because you never know when the people that cross your path are there for a reason.

Many of the moms that work in industry are some of my closest friends. As we are making decisions for our kids, we take in all the information from the HTC, our friends, family and other moms, but the ultimate decision is with the parent. I was always second guessing myself in the beginning. Thankfully, there is a great network for moms to rely on. Make sure you have a good group of experienced moms in your Hemo Tribe. Jess is part of my tribe.

Jessica is a great resource for you if you have questions or just want to have someone who will listen to you without any judgment. I am not on service with her and wanted you to know that I strive to bring you people and information that have helped me in my journey, no matter what they do for a living.

We talk tips and tricks, her Hemophilia journey and the lessons we have learned along the way. We both do not see Hemophilia as a negative aspect, just a fact of life. Focusing on the positive aspects of the disorder – the empowerment from being able to stand up for your kids, the friends that we would never have made, the resilience that the kids build

 

Hemophilia Logs

MicroHealth always do your due diligence and figure out what works for you

Infusion Boot Camp

 

Contact Jessica:

Facebook is preferred method

email her

 

AZ connections:

Cascade Foundation – RSVP for Back To School 7/22

Arizona Hemophilia Association – RSVP for Annual Meeting in Tucson

 

CA Connections:

Hemophilia Alliance of Orange County – RSVP for the 3rd Annual Surf Event!

Heather – RSVP for Dinner on the 19th at Ralph Brennan’s Kitchen

 

Meet Your New Swim Coach

Hello Bleeders!

We have added a new column to Hemos Unite! Introducing (again, if you follow the podcasts) one of my BFFs (thank you Hemophilia, I never would have met this amazing woman otherwise) HEATHER to the HU site.

She will be contributing to the site to inspire you to gain confidence in and out of the water. So, here is the Awesome Heather talking about how she combines two of her passions, swimming and working with bleeding disorders:

I am a swimmer.  I began swimming around the age of two as my physical therapy.  I was born with hip dysplasia and had three surgeries before the age of two to correct this.  The doctors told my parents that swimming would be the best for me.  I became a competitive swimmer during grade school.  I raced up through high school then took a 20+ year break to have my children.  I came back to competitive swimming six years ago.

I am an advocate for those with bleeding disorders.  Welcome to my world of bleeding disorders, introduction from my son, born Feb. 2003.  You can listen to my podcast about becoming part of the bleeding disorder community here.  I have found this to be the most loving and close knit community, and wouldn’t change being here for anything.

Both my son and my swimming made me a stronger person.  Stronger both mentally and physically.  Both made me a better person, more true to myself; one who follows her passions and does what is right in her heart.  The leaps and bonds I have made in the past years because of my son and swimming make me who I am today.

So here is my blog.  I want to share my love of swimming and my love of the bleeding disorders community with you.  I want to share how these have made me grow.  I want to share a wonderful way to combine the two.

As a side note to each monthly blog, I will do a little update on the happenings in the swimming and hemophilia world in Southern California.

June 2nd-4th, Family Retreat…So Cal Chapter

Oct. 8th, Long Beach Marathon…So Cal Chapter

See you in the water,

Heather

Check out the Shire CoPay Assistance Program: hematologysupport.com

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

Hangin’ Out in Arizona

Well, by now you may know that we have added Arizona to the list of states that we cover in the Hemos Unite volunteer community. This place is awesome. I have heard about the great Arizona Hemophilia Association, and was super excited to become a member of the family. The tales you hear are all true. These people are amazing. You will see from the lack of coverage that:

  1. I was having a great time, and wasn’t filming a lot,
  2. had footage with people or kids, so I didn’t want to put that on YouTube and
  3. My son pretty much loves his Arizona Adventures

Here a a couple of quick shot of stuff AHA did over the summer and I can’t wait to do more.

Donate Here:

Arizona Hemophilia Association

Hemophilia Alliance of Orange County

Mauli Ola Foundation

and if you want to help us: Hemos Unite (but there are no tax incentives since I am just a mom volunteering her time and funds for the cause)

 

 

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!

We saw the Famous Arizona Salsa Challenge

  Arizona Hemophilia Association: http://www.arizonahemophilia.org/ and their Facebook Page: https://www.facebook.com/AZHemo Salsa Challenge FB: https://www.facebook.com/salsachallenge/?fref=ts San Diego (HASDC) http://hasdc.org/en/home/ Hemophilia Alliance …

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Hemos Unite Summer in December

Another installment of YouTube Happenings. Please subscribe to The YouTube while you are there and give the video a thumbs up if you want more 🙂