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

Thanks to our sponsor!!!!

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

Tucson Ladies Night

Oh Hello.

It has been a while. Thought I would let you know I want to hang out with you in April if you are in Southern Arizona.

My ladies dinners are where I have met some of my fastest and bestest friends. We all have the inst-bond of being caretakers, carriers or affected. That always opens our hearts a little more than a cold meeting. From the natural acceptance of each other, these dinners spawn great ideas and fill our happiness tanks.

I am teaming up with Jessica from Brothers Healthcare and Bayer, because you know Hemos Unite loves sponsors.  If you don’t know Jessica, you are in for a treat. She is such a joy. She is a hemo mom and a connector of people and ideas. I met her last year when I first landed in Arizona. Jessica has a genuine desire to help people and that is why I am drawn to her. I am not on service with her, so if your feathers were ruffled, you can chill. I just like her. A lot. I know you will too.

This dinner will be for the Ladies only and our goal is to connect to each other and see how we can help bring the Tucson Bleeding Disorder Community together. This is pretty selfishly for my benefit too – not gonna lie about that one. I would love to find some ladies that “get it” for my Tucson circle of friends.

XOXO,

Matti

 

 

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 of Orange County: http://www.haoc.org/

HAOC FB: https://www.facebook.com/hemoallianceoc/?fref=ts

Randy DeSantis: message me for her details to get on the mailing list

Hemos Unite: http://hemosunite.com/

Hemos Unite FB: https://www.facebook.com/HemosUnite/

If you like this video please subscribe and if you REALLY like this vido, consider donating 1$ to a charity of your choice.

My favorite charities (and recurring donations) are:

Hemophilia Alliance of Orange County: http://www.haoc.org/

Hope For Paws: http://www.hopeforpaws.org/

Tubie Friends: http://www.tubiefriends.com/

Last Chance For Animals: http://www.lcanimal.org/

In Defense of Animals: http://www.idausa.org/campaigns/dogs-cats/dogs-and-cats-of-south-korea/

 

 

 

 

CHLA Day This Weekend in SoCal

This is one of the BEST Bleeding Disorder Days I have ever attended. You all know that our team (especially now retired Kathy M) at The Hemostasis and Thrombosis Center at Children’s Hospital…was the best at helping us understand Hemophilia and learn how to control as much as we could. The families that I met at this event, when my son was just an infant, are so dear to me.

Nicole was an experienced Hemo mom that told me she cried all the time and that was ok sometimes. She also told me to never hold down my son for factor infusions (best advice ever) so we learned how to make a 9 month old a willing participant. Brenda is still the funniest lady I know. Her intelligence and “realness” is such a beautiful spark. Rebecca became an instant bestie who is just plain ole dorky, but in a cool, I wish I was like her kinda way. I love these ladies who are always top of mind when CHLA Day rolls around. Thanks gals for being part of my family.

If you have never been to this, please sign up. You will make great friends and there is time to really get to know each other and see if there is a connection.

You can attend if you are industry and are also a member of the community. Being Community trumps your job every time. There was a rumor out there that you could not attend if you worked for industry, but you can if you are affected.

Helpful Hints:

Arrive hungry – there is usually so much food that you are STUFFED by the end of the day.

Sit with someone new! Get to know the members of the community and find some new parents to welcome into the Hemo Family

Arrange for a playdate or Picnic in the Park with some of your new friends ASAP. If you need help with this, comment below and the Moms of HU can help you. Find Marcie Reynolds and tell her you want to be a part of Hemos Unite, or need help getting an event together. She is one of the sweetest people I know and LOVES to bring the community together.

Get enough rest the night before, the breaks in between sessions are quick and you need to be ready to move

Plan out your tracks and have a central meeting place in the area to meet your family and check in. Reception is sometimes spotty so texting may not be fast enough.

Have a great day.

CHLA Day 2016

Thanks Children’s Hospital Los Angeles. This is a fantastic event.

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 🙂