ch&ler

Achondroplasia, Limb Lengthening, Travel

Fundacíon ALPE Acondroplasia 2018

October 18, 2018 No Comments

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 […]

Achondroplasia

Dwarfism Awareness Month 2018

October 7, 2018 No Comments

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*

Achondroplasia, Limb Lengthening

Another lengthening?

September 20, 2018 No Comments

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 […]

#SundayBunday, Lifestyle

#SundayBunday – Pure Barre

September 2, 2018 No Comments

Hello, September…or should I say Septembarre? 😉 It’s officially been a month and a half since I have started Pure Barre and I am LOVING IT!! Even though it’s only been a little over a month, Pure Barre has been the best thing to happen to me.

Achondroplasia

Therachon Measuring Study

August 17, 2018 No Comments

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.

Limb Lengthening

One Decision

August 5, 2018 No Comments

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 […]

Beauty

ipsy July Glam Bag

July 28, 2018 No Comments

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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