Episode 9 New York Times Bestseller Barry Lyga!

I can’t believe Barry was so kind to let us peek into his world with an interview for Hemos Unite! This is a pretty cool guy, he has made me a super fan and I am buying everything he has created. Literally.

This is a great chat, not necessarily about Hemophilia, but more about this smart, entertaining, accomplished writer and his work. He has written the widly popular Young Adult fiction books, the I Hunt Killers series. There are several short stories to satiate the hungry fan as well. One of them, Blood Boy, is a portion of Howie’s story. Howie is the Hemophiliac Side Kick to the main character, Jazz. What is incredibly unique about this e-book, besides an author giving his fans more through additional awesome content? For the rest of the year, all the proceeds from Blood Boy will go to the Adam Lynch Award. How cool is that? I am also gifting out 10 copies of Blood Boy to the first 10 reviews on iTunes or comments here on the website.

Mentioned on the pod:

Baxter Event from Randy (805)402-5952

Awesome Event for Hemos Unite!

Season 4 Stop The Bleeding

The Astonishing Adventures of Fan Boy and Goth Girl

Patrick James Lynch and Believe Digi

Blood Boy


Adam Lynch Award



4th Book In Barry’s I Hunt Killers Series

Vaughn Ripley


More Barry Lyga:


Barry’s Twitter

Barry’s Facebook



Get the books! Local Independent Bookstores, Barnes and Noble – I am hooked!

Hemophilia Mother Episode 8

Surpise! An extra podcast this month!!

So excited about this lovely guest! The creator of the popular Facebook page Hemophilia Mother, Milena was so cool to talk to. She is just so wonderful and really making a difference out there. You are going to really enjoy this amazing woman.  She is heavily involved in the community and is focusing on how to help the world. She mentions that 60% of Hemophiliacs around the world are not receiving treatment. Can you believe that? I know we struggle here in the states because factor and the care is outrageously expensive, but at least we can get the medication. So what can we do to help all of our hemo families? Get involved.

Mentioned on the pod:

Hemophilia Mother on FB

Canadian Hemophilia Society

World Federation of Hemophilia 


Find More Milena on her Hemophilia Mother Facebook page!

Thank you Milena, you are a such a beautiful person!!!!!






Nurse Jane Episode 7

Jane has some amazing stories about her experiences (and foreshadowing) with Hemophilia and has the coolest kids on the planet. She has lived a very interesting life and has taught me a lot and given me a of of ideas. The differences in how the community was and how it is now is so different, some good, some bad, but she gives us some great ideas on how to bring the community closer together.

There is a little background notice on this recording so bear with us, this is great content.

Mentioned on the Pod:



Laurie Kelley Communications

Save One Life and Waves of Compassion

Aquatics Therapy


Baxter, CSL Behring, Bayer, Phizer 


There Is More To Life and Hemophilia A

Get 10$ for the survey: Identification of Patient/Parent Mentors & Other Preferred Resources in Bleeding Disorders: Survey Responses Needed…KOLComm, a market research company based in New Jersey, is requesting your help in completing a 10 minute survey. All survey takers will be paid $10.00 for completing the survey in full. The purpose of this study is to understand the challenges of living with bleeding disorders and how patients and parents support each other.

Great thoughts from Jane: Get a Master – find an HTC or doctor that you trust and utilize them. Every trial and hard time happens for a reason and we are all better for it (EVERYone can benefit from this outlook!)

If you want more Jane, head over to her Facebook page!

Thanks again Jane! See you soon 🙂



Randy Desantis Episode 6

Everyone in my area knows Randy, she has been a wonderful resource for many of the families in the Southern California area. She conducts many educational programs and is so caring. When you meet her it feels like she has been a part of your life forever. She has a warmth and love that just envelops you and makes you feel safe. Randy really encourages us to get out and meet people! Start with your foundation, find a support group and if you can’t find one – start one. Attend as many events as possible and even if you are shy, give or get a  phone number or contact info so you have a lifeline when you need it. Reach out to the manufacturers and see if they have events – I think I am going to get on that one! Mentioned on the chat: HIV and Bleeding Disorder Community Laurie Kelley SoCal Foundation NHF and if you like to tweet, they have monthly chats usually on THIRD Wednesday of the month at 1pm EST  just go to #HemoChat and join the conversation HFA Cottage Hospital If you felt a connection or want to just chat with this amazing women please reach for more Randy! rdesantis2514@gmail.com Call her! 805.402.5952

The PJL: Patrick James Lynch Episode 5

I just love this guy!!! He is so genuine, caring, articulate, funny and gives so much with seemingly endless creativity and energy. Patrick James Lynch is an actor, producer, director, speaker and advocate for the Hemophilia community. He is also the creator of Stop The Bleeding web series on youTube, which is popular in our community.

He maintains a very open journal on his home page which he speaks about his experiences with getting proper treatment at Kaiser and thankfully, he is making progress with them. His journal is great if you all haven’t read it already. It is insightful and honest and sometimes hard to read because it hits close to home.


Calendly – what I use to schedule Hemos Unite podcast

HANYScholarships for those in the community

Jesus Christ Superstar


LeBron James

Courses for Creatives by The Blacksburg Belle and Mayi Carles and another cool blogger, Nicole Antoinette who has a great way to work on goals and balance.

Powering Through

Gary Vaynerchuck 

More PJL:

Twitter @pjlynch

Believe Digi

Believe Theatrical



Morgan Episode 4

I LOVE Morgan! I had the pleasure of meeting her at event that Randy puts on (thanks Randy!) and she is just one of those people that instantly makes you feel comfortable. She is happy, helpful and has a beautiful smile. She is very special in the Hemo community because she is engaged to a severe A and is super supportive and loves to learn and help the community.

She tells the tale of how she met her love and her first infusion experience.  As always, I learned a lot from hearing her thoughts and experiences. She has some great ideas for an event for those of you who are a sibling, grandparent, spouse, supporter, friend or family of someone with a bleeding disorder. If you are interested in getting more info about that, please reach out to her and let her know you want it!

Mentioned in the Pod:

Coastal Ride this is insane and I am so impressed by the physical ability of these people. Fantastic promotion of healthy Hemos and a fantastic event.

Blood Donation Eligibility a quick Google search and this was the best I could find. You will need to contact your local organization to find out if we are still banned from donating blood.

Reach out to Morgan:



2broswithhemo: Cazandra MacDonald Episode 3

Cazandra MacDonald is awesome and if you have any experience with Hemophilia, you know that she is a fantastic advocate and positive force in the community. She is a pastor’s wife, a musician and heavily involved in church ministry and “there is no such thing as normal” in her life. She was introduced to the bleeding disorder community with the birth of her first son and it was a shock to her.

She started the Two Brothers With Hemophilia blog, which personally helped me as I was learning about Hemophilia. She started the blog as a way to get out the thoughts and feelings she was having. She never thought anyone would read it, but as she started hearing back from readers, she knew it was helping other people.

Oozing Every Day is another blog that she started which is more faith based. She is passionate about motivating and empowering women and is happiest when she has the opportunity to help others.

She really believes in the power of connection. She recommends getting a phone number, a facebook of someone that you connect with so that just in case you need someone to talk to, you have a contact who understands what you are going through. She lost her brother, Ronaldo Julian, a brother she never knew, but means so much to her.

I consider Cazandra an expert and so helpful and you will feel her willingness to help and caring spirit. She has been through, helped through and seen a lot in her years living with hemophilia

National Hemophilia FoundationNHF, hemophilia.org check here for chapter listings if you want to find a chapter near you.

HFA she thinks Hemophilia Federation of America has “really bumped up their game” with information and webinars.

Parting words: It is going to be ok. Take what you can right when it is happening and live each moment. Take it day by day, moment by moment and sometimes breath by breath.

Find Cazandra:

Facebook: Cazandra MacDonald



Twitter @2broswithhemo

Cazandra’s Pinterest Boards

Prophyholic Hemo Mom! Episode 2

Meet the super sweet, Lovee! I love her blog and it really helped me through my sharp learning curve when hemophilia was thrust into my life. I know you all have read some of her thought through her blog or on her FB page. Meeting her via skpe was like meeting my own little fairy godmother. She will never know how much reading her stories helped me.

My favorite posts:

10 Year Mom Award

Teaching The Gift of Giving

Great Take Aways from Lovee: Show Up! Make sure you are getting to your chapter meetings and events. Stay involved, educated and aware. Lovee brings up an important point about the new views on inhibitors, that will help you at your yearly check ins.

Mentioned in Podcast:

New Jersey Chapter

NHF Meetings

North Carolina Chapter

South Carolina Chapter

Southern California Chapter

CSL Behring Moms Group

Sandwich Generation

Maria Shriver

More Lovee!:

ProphyholicHemo Mom at prophyholic.blogspot.com

Prophyholic Hemo Mom On Facebook

Twitter: @prophyholic

Big Giant Rebecca Episode 1

Meet the Amazing Rebecca! Her son was finally correctly diagnosed with Severe A at age 7. He had been treated for arthritis for the three years prior to this diagnosis. Through their journey she learned several empowering lessons and has become such a strong advocate for her family. Their story is incredible and I am so in awe of her strength and optimism. I want to be just like her when I grow up!

With an active 8 year old hemo who did not grow up “with” Hemophilia, they have a whole new set of decisions and a huge learning curve that they are tackling and conquering. With a new lease on life with the prophy doses of factor, life has been so much better for everyone in the family.

She recommends that we should all trust our inner voice and stand up for our kids, and loved ones. Ask questions until you are satisfied and understand exactly what is going on with your family. My favorite Rebecca-ism: “Be a Bigger Mouth!” Her final thoughts are perfect. “Trust your instincts. It gets easier. Remember to breathe and don’t second guess yourself.”

Links to the resources and people mentioned in the pod:

Dr. Young – I think we all have a special place in our heart for this man and his amazing team at CHLA. As Rebecca says, we will be forever in his debt.

Randy Desantis – Works at Factor Support Network, (not CSL Berhing – I misspoke during the pod)

Patrick Lynch – from Believe Digi. Actor, Writer, Producer, Speaker, Advocate and All Around Great Guy.


Contact Rebecca at:

Twitter: BigGiantRebecca