Hemos Unite Goings On

See what Hemos Unite has been doing lately! If you are in the Southern California area we do our own educational dinners and workshops, so sign up to be notified of our stuff!

 

Thanks Novo Nordisk for sponsoring our awesome dinner!

Stuff I talked about in the video:

SoCal Foundation Events – Hurry there is one this weekend! Thanks Michelle for taking over and creating all the cool stuff for the community.

Hemophilia Alliance of Orange County Donate here!  You all know this is my favorite Hemo group! The surf event that they did with Mauli Ola Foundation will be going up soon 🙂 They had professional surfers come down and teach our Hemo kids how to surf!!!! Awesome!!!!!

Donate to Tubie Friends! If you don’t have one yet, this really relped my little guy feel like a regular kid with Sam his stuffed dog with a port. I donate to them every month.

Send me a request for Barb’s phone number if you want to talk to her about what you are going through. Sometimes you just need to talk.   I will private message you her phone number

Season Two of the podcast will be coming soon. Click here to catch up on season 1.

Subscribe to the Hemos Unite Playlist on our YouTube

 

 

August Lookback on Vlog

This month has been CRAZY! So much personal stuff happening, so I apologize for not talking to you in a while. Here is a little recap of the stuff we have been able to attend in SoCal. I hope this inspires you to get out and get involved in your community or a charity that you would like to support. 
 
I truly believe that if everyone just put out just 1% more effort then they are doing, the world would get better and better. Find a cause you are passionate about and Get Involved! You will make a difference in someone’s life – I guarantee it. 
 
If you would like to support my favorite charity, please go to haoc.org and donate whatever you can. I have recurring donations to them, Tubie Friends: http://www.tubiefriends.com/ and Hope For Paws http://www.hopeforpaws.org/

 
Stuff coming up:
 
Saturday Sept 19:
 
Sunday Sept. 20: 
Shaka Surf Event with Hemophilia Alliance of OC and Mauli Ola Foundation!!!! Register here–>  http://www.haoc.org/surf_event
 
 
Sat. October 3:
The Coalition for Hemophilia B for a meeting in Anaheim, 8am-4pm. Breakfast, lunch and snack will be provided and the kids get a day trip to Disneyland!!
 
Gas and tolls are reimbursed and parking is paid for compliments of the Coalition for Hemophilia B (please keep your receipts) to Register: http://coalitionforhemophiliab.org/ 
 
Oct. 9-10:
Save the Date for Randy’s Womens Education Days! Call her to RSVP – her number is in the sidebar 😉
Credits:
Music:
Amazing Plan – Silent Film Dark by Kevin MacLeod is licensed under a Creative Commons Attribution license (https://creativecommons.org/licenses/by/4.0/)
Marvin’s Dance, by Silent Partner
 

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

 

 

 

BEACH DAY July 12, 2015

Beach Day (2)

Another Picnic in the Park style event – but this time we are heading to the beach! As always, everyone is welcome to Hemos Unite events. The purpose of Hemos Unite is to bring everyone together in a safe environment so you can get to know each other on a personal level. We also want to know your family, friends, teachers, neighbors…anyone who wants to show their support for the community. We are here to learn about different disorders and break down the walls of judgment and ignorance. All how seek to do the same are welcome with open arms.
There are a lot of non profits and individuals that have elected to speak out or create events to help the community. MORE events and MORE programming is wonderful. I am so excited that everyone out there is focused on bring great stuff to the community, so if you have “stuff” planned,  let everyone else know about it!

Hemophilia Alliance of Orange County will also be there with information, so please come out and meet your resource in Orange County!

There will be a concert that day starting at 11 am and another starting at 5 pm. The beach is in the midst of their free concert series, so be prepared for a crowded day (which is why we are getting there early) .

Really excited to see new friends and old.

Weekly Update for HU!

Hi everyone – We are going to continue the weekly vlog on YouTube and really could use a name for it. Can you help me? Leave some ideas in the comments 🙂 Be nice!!

There is still time – but only a few days – to apply for HeroPath, so hurry and take advantage of this awesome program!!!

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.

What Is Going On In June

Stuff going on in June:

 

Novo has a COOL opportunity for Hemos ages 16-25, hear more on the Podcast out SOON, but check out the Link for a chance to get a leg up on LIFE from expert Jeffery Leiken who teamed up with Novo Nordisk! Deadline to apply is end of June so HURRY!!!!!

Biogen is doing some Education Dinners about their products for the Hemo World – so check them out if you have questions:

Eloctate Info:

Friday, June 12: La Traviata 301 N Cedar Ave., Long Beach, CA    Speaker: Dr. Quon

RSVP to Maria Perez 323.236.1257 or maria@bioigen.com

ELO Friday June 12 (1)

 

Saturday, June 20: Maggiano’s Little Italy 189 the Grove Dr., LA, CA   Speaker: Claudia MacKaron, RN

RSVP to Jessica Klass 626.238.0244 or jessica.klass@bioigen.com

ELO Saturday  June 20

 

Alprolrolix Info:

Friday, June 19: Maggiano’s Little Italy 189 the Grove Dr., LA, CA   Speaker:  Robert Miller, PA

RSVP to Jessica Klass 626.238.0244 or jessica.klass@bioigen.com

ALP Friday June 19

 

 

Of course our Braving Change Event with Biogen on Sunday June 28 at Hotel Irvine:

braving change