Episode 11 Candace Clifford

Candace is  one of the coolest ladies I have ever met. She is fiercely intelligent, beautiful, a strong advocate and really knows her stuff.  They are a military family and the ins and outs of getting proper care with base doctors is interesting and another example of how we all have different stories and experiences in this crazy bond of Hemophilia we have. Hemophilia runs in her family, but it wasn’t talked about when she was growing up.  Even though she knew it ran in the family, she did not know that it was a possibility that her kids may have Hemophilia. The family history and story of her finding out how Hemophilia may affect her is so interesting. I actually learned so much from this chat.  Her youngest has Hemophilia B, which is rare, and he is a bleeder. This awesome mom fought to get her child on new medication because she is very aware and self educates. Lesson – keep fighting for your kids!!!!

After listening to Candace, I feel SO LUCKY with my son’s birth. We did not know there was any possibility of Hemophilia and I was in labor for 36 hours before we did a C-section. He could have had major head trauma, and thankfully, there was none. Candace’s boy had a LOT of bleeds when he was a a little guy and there were a LOT of E.R. visits.  The family had to fight for the port, fight for the factor, fight for the correct meds and they continue to fight to do what is right for their kids.

She has a burrito stealing dog who talks throughout the episode, so you will come to love this pup as well as Candace.

Mentioned in the pod:

Hemo Moms Unite Dinner

Powering Through Event on Jan 17 Registration

Joel Stein

Hemophilia B

BeneFix

Hemophilia in the 1950s

Dr. Marion Koerper PED/ONC UCSF Medical Center

Dr. Courtney Thornburg, Rady Children’s Hospital 

Factor Support Network and Randy Desantis thanks for introducing us Randy!

504 Plan

PSI  – I Love PSI!

 

To get in contact with Candace:

clifford02@gmail.com

 

Episode 10 Vaughn Ripley

I feel so blessed to have met Vaughn. What an inspiration! His energy, outlook and story are amazing. He is a triathlete, published author, blogger, speaker, musician and inspiration to many. He is a “Hemo-lebrity” in our community and I could talk to this guy all day. I was so energized after our chat and I am so excited to see what he does next.

I really appreciate Vaughn’s honesty, bravery and authenticity. He is so comfortable in his own skin and not only is he an inspiration to hemophiliacs and HIV affected people, he is an inspiration to just plain old people. I know you will enjoy hearing from Vaughn and will want to get in the gym and start strengthening up your muscles, be an engaged parent, make the most of your 16 hours, eat better and just BE better. I love this guy and I need him in my life, so will you after this.

Mentioned in the Pod:

Barry Haarde

Men’s Health Cover Battle on Fox5

Noah Galloway

NSPA

Vaughn’s Video and Survival Pie

Kaizen

 

More Vaughn!!

Vaughn on Facebook, personal page

Vaughn’s Author page on Facebook

VaughnRipley.com

Vaughn’s Tweets @VRipley send him a tweet about hearing him here!

Vaughn’s LinkedIn

Vaughn’s YouTube

Buy the Book!!!!

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

HANY

Adam Lynch Award

Hollywood 

UnSould

4th Book In Barry’s I Hunt Killers Series

Vaughn Ripley

 

More Barry Lyga:

Barrylyga.com

Barry’s Twitter

Barry’s Facebook

Tumblr

 

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 

 Hemaware

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:

Disneyland

Swimming!

Laurie Kelley Communications

Save One Life and Waves of Compassion

Aquatics Therapy

Inhibitors

Baxter, CSL Behring, Bayer, Phizer 

CHLA and CHOC

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.

Mentions:

Calendly – what I use to schedule Hemos Unite podcast

HANYScholarships for those in the community

Jesus Christ Superstar

Baxter

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:

morgan.preston24@gmail.com

 

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

2brotherswithhemophilia.blogspot.com

cazandramacdonald.com

Twitter @2broswithhemo

Cazandra’s Pinterest Boards