Fundacíon ALPE Acondroplasia 2018

If you were keeping up with me on social media last week then you probably know that I was in Spain for the sixth International Congress on Achondroplasia and other Bone Dysplasias. This three-day event is put on every four years by Fundacíon ALPE Acondroplasia. ALPE is such a wonderful organization that provides information, gives support, sponsors medical advice and creates bonds for families and children with achondroplasia and other forms of rare bone dysplasias. I had the honor of meeting Estefánia and Susana earlier this year while in Maryland for the Joint Pediatric Advisory Committee and Endocrinologic and Metabolic […]

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Dwarfism Awareness Month 2018

If you don’t already know, October is dwarfism awareness month & if you weren’t aware, I have dwarfism – obviously. I know it’s hard to tell *sarcasm* So I thought I’d participate this month and share a bit here and there about my thoughts, feelings, and opinions about it all – so let’s go ~ I was born with the most common form of dwarfism, achondroplasia and I’m going to be real here and say that having dwarfism IS NOT JUST BEING SHORT 🤜🎤💥 *mic drop*

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Another lengthening?

Ok so the title may have been a little clickbait – sorry 😂 – TBH Dr. Standard and I did talk about it (I’ll get to that later) You probably already know but I was in Baltimore last week. It’s been a while since I’ve seen Dr. Standard and I’ve had a few things that I have been wanting to discuss with him in person – it was also Save-A-Limb weekend. The appointment went great. One of my main reasons for this appointment was because I turn 25 in a couple of months which means I only have one […]

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Therachon Measuring Study

Therachon is a pharmaceutical company developing a treatment with the goal of reducing the burden of complications of achondroplasia. In this regard, we are seeking U.S. based patient volunteers to be filmed in a short video intended to train health care professionals working on our clinical trials. The training will focus on best practices for measuring patients with achondroplasia, with a particular interest in areas that relate to the complications of achondroplasia.

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One Decision

Today’s post is going to be a little different. I’m not going to recap my week but I am going to share a story. 8 years ago today I made a decision that would forever change my life. (Also, let’s ignore the fact that I didn’t post a recap last week 😂 These last couple of weeks I’ve been finishing up my summer classes and have had other things keeping me way busy.) But hopefully, this post makes up for it 🙂 I remember it so vividly. To start, my family and I had just spent a long weekend up […]

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ipsy July Glam Bag

Every month I receive a Glam Bag from ipsy! If you don’t know what ipsy is, it’s a monthly subscription service that is $10 per month and every month I receive 5 beauty products based off of my own preferences. I enjoy this subscription because I get a variety of all different products and brands that I may not pick up or even find in my local stores. 

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