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.
This was AMAZING!!!!!!!! We learned how to find veins and I got a vein on the first try – with a LOT of help and a willing volunteer. Great people, great education and a lot of fear taken away. So empowering! Thanks for inviting us Randy!!
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.
THIS WAS AWEOSOME!
We had a dinner at Roy’s in Pasadena with some education from Antonio Rosas from Biogen Idec. It was SO FUN and the turn out was fantastic!!!!!! I wanted to cry all night because I was so happy to see all the Hemos being so cool (and forgiving because we were so squished in!) and happy. Laughing and hugging and meeting old and new friends. I really think we are on to something. I know in California we are struggling a little bit to find a way to meet others in the community…this might be something that brings us all together.
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.
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!)
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 CommunityLaurie KelleySoCal FoundationNHF 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 HFACottage Hospital If you felt a connection or want to just chat with this amazing women please reach for more Randy! firstname.lastname@example.org Call her! 805.402.5952
Our first Meet HU Event was August 9, 2014 at Loma Alta Park in Altadena, CA. There are two playgrounds, swimming pool, sports fields and gymnasium on the top level where we we set up.
The kids went nuts for the first two hours on the playgrounds while while the adults met and got to know each other.
There was way too much yummy food and we are all still stuffed.
We were reunited with friends made at previous events and welcomed a new family to Southern California. Superman made a guest appearance and so did some of our favorite people from CHLA HTC team. It was a great mix of people and everyone was so nice and open. Thanks everyone!
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.
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.