Tucson Ladies Night

Oh Hello.

It has been a while. Thought I would let you know I want to hang out with you in April if you are in Southern Arizona.

My ladies dinners are where I have met some of my fastest and bestest friends. We all have the inst-bond of being caretakers, carriers or affected. That always opens our hearts a little more than a cold meeting. From the natural acceptance of each other, these dinners spawn great ideas and fill our happiness tanks.

I am teaming up with Jessica from Brothers Healthcare and Bayer, because you know Hemos Unite loves sponsors.  If you don’t know Jessica, you are in for a treat. She is such a joy. She is a hemo mom and a connector of people and ideas. I met her last year when I first landed in Arizona. Jessica has a genuine desire to help people and that is why I am drawn to her. I am not on service with her, so if your feathers were ruffled, you can chill. I just like her. A lot. I know you will too.

This dinner will be for the Ladies only and our goal is to connect to each other and see how we can help bring the Tucson Bleeding Disorder Community together. This is pretty selfishly for my benefit too – not gonna lie about that one. I would love to find some ladies that “get it” for my Tucson circle of friends.

XOXO,

Matti

 

 

CHLA Day This Weekend in SoCal

This is one of the BEST Bleeding Disorder Days I have ever attended. You all know that our team (especially now retired Kathy M) at The Hemostasis and Thrombosis Center at Children’s Hospital…was the best at helping us understand Hemophilia and learn how to control as much as we could. The families that I met at this event, when my son was just an infant, are so dear to me.

Nicole was an experienced Hemo mom that told me she cried all the time and that was ok sometimes. She also told me to never hold down my son for factor infusions (best advice ever) so we learned how to make a 9 month old a willing participant. Brenda is still the funniest lady I know. Her intelligence and “realness” is such a beautiful spark. Rebecca became an instant bestie who is just plain ole dorky, but in a cool, I wish I was like her kinda way. I love these ladies who are always top of mind when CHLA Day rolls around. Thanks gals for being part of my family.

If you have never been to this, please sign up. You will make great friends and there is time to really get to know each other and see if there is a connection.

You can attend if you are industry and are also a member of the community. Being Community trumps your job every time. There was a rumor out there that you could not attend if you worked for industry, but you can if you are affected.

Helpful Hints:

Arrive hungry – there is usually so much food that you are STUFFED by the end of the day.

Sit with someone new! Get to know the members of the community and find some new parents to welcome into the Hemo Family

Arrange for a playdate or Picnic in the Park with some of your new friends ASAP. If you need help with this, comment below and the Moms of HU can help you. Find Marcie Reynolds and tell her you want to be a part of Hemos Unite, or need help getting an event together. She is one of the sweetest people I know and LOVES to bring the community together.

Get enough rest the night before, the breaks in between sessions are quick and you need to be ready to move

Plan out your tracks and have a central meeting place in the area to meet your family and check in. Reception is sometimes spotty so texting may not be fast enough.

Have a great day.

CHLA Day 2016

Thanks Children’s Hospital Los Angeles. This is a fantastic event.

Hemos Unite Summer in December

Another installment of YouTube Happenings. Please subscribe to The YouTube while you are there and give the video a thumbs up if you want more 🙂

 

 

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
 

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!!!

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