Podcast Episode 28 Meet Cassandra

 

Hemos Unite is proud to host another incredible guest who is proving that you can live a rich, fulfilling life with a rare blood disorder. I feel so lucky that we have such empowering people in our community.

Meet Cassandra, an accomplished woman in Southern Arizona who is speaking about her Glanzmann Thrombasthenia  in an effort to educate more people about bleeding disorders. While GT is extremely rare (roughly 300 people according to NORD), it is a blood disorder that is related to Hemophilia, Bernard-Soulier, Storage Pool Disease, and May-Hegglin.

Cassandra has some great ideas about using her love of the arts to promote education and is willing to give her time and energy to answer questions. I hope you enjoy getting to know her and will reach out with any ideas you may have to make an impact in your community. Brainstorming with other members of the community benefits everyone.

 

David Wilcox Medical College of Wisconsin

Dr. Danielle Nance

Arizona Hemophilia Alliance

Hirudoid

Stop The Bleeding!

 

Chat with Cassandra:

Facebook

LinkedIn

email

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

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.