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

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

What is This All About? Episode 0

A little about Matti and how this pod came to be. We were hoping to release one a week, but we are starting with one a month. Editing and scheduling will hopefully be less time consuming as we move forward and the goal is to be able to release one each week.

Please let me know what you would like to hear. This is a podcast to help the community so let me know! We would really love for you to subscribe in iTunes, so we can be seen and get the word out. I am luck that I had a big chapter and lots of support. There are many of us out there that do not. I hope that those who feel alone can listen to all of our stories and gain strength and positive energy in a time of need.

Thanks!

You can schedule a recording if you want to be a guest

Follow Matti on Twitter

Find the pod and subscribe on iTunes

Like the HU Facebook page

 

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