I’ve been a member of LPA for as long as I can remember. My parents joined the organization when I was a toddler. They can still remember the first conference that they went to, though it is a bit harder for me to remember. We quickly formed friendships and the friends that they made 25+ years ago are still friends today. When I was born, my parents did not know anything about dwarfism; no one in my extended family has dwarfism, and no one they knew had dwarfism or had heard about it. LPA provided, and still provides, a place where parents can get answers to questions they have about dwarfism, speak to doctors who specialize in dwarfism, and ask questions about medical problems associated with the different types of dwarfism.
Being involved in LPA has allowed me to meet and make new friends from all over. I have competed competitively in various sports that have allowed me to travel to places such as Boston, Toronto and Ireland. LPA allows me to “be myself” when it’s sometimes hard to. My local LPA chapter has allowed me to share my experiences with newer members. I act as a role model for younger members and am always available for them to ask questions to. Attending LPA events allows me to have fun while hanging out with people I don’t get to see every day. From pool parties as a teen to nightly dances for all ages, regional and national events are a great place to meet friends from all over and share experiences. Local events are even better, as they bring people in your area together doing different activities – going to a Phillies game, watching an Eagles game at a sports bar, bowling, etc. As I’ve gotten older, I try to attend as many events as I can. It is a great place to see old friends, meet new ones, and have fun.
Growing up, I was always told the world’s not going to adapt to you; you need to learn to adapt to it. At 27, almost 28 years old, I think I’ve learned to thrive in a world that wasn’t built to my size. I graduated from Wissahickon High School in 2007, graduated from the University of Pittsburgh in 2011, and then began working right after. I currently work for a pharmaceutical data management company as a Senior Project Specialist, where I help manage international clinical trials. I get to travel around the world and interact with doctors and nurses from all over, all while not letting my height get in the way.
I recently purchased my first house that I am working to fix up. My house is not being adapted to me; instead, I’ve made minor modifications that would allow everyone, including myself, to be comfortable in my house. learned how to adapt to everything around me with some minor modifications and anyone would be able to use my house.
Ali, Montgomery County Pennsylvania
Meet Hope & Family
We joined the LPA community a year ago when Hope was only 8 months old. LPA has been an amazing resource for us. We’ve reached out to the group for recommendations and ideas for adaptations several times. This group has helped us find shoes, given us ideas on what furniture to buy and helped us find the best doctors in the area. Knowing that we can turn to this community for help and support means the world to us. Aside from helping Craig and I, we are very excited that Hope will grow up with friends that she can relate to and mentors that she can look up to.
We attended the National Conference in Boston, MA in July. One of the highlights of the conference was meeting three young adults who also have Ellis-van Creveld. Because EVC is such a rare form of dwarfism, it is sometimes hard for physicians and specialists to tell us what to expect. Meeting these three incredibly kind and open people gave us so much insight into Hope’s future. Aside from answering our questions, we know that they are also there to help guide Hope too and that is truly priceless. If anyone has the opportunity to attend a national conference, we strongly recommend it. It was an amazing experience!
We are looking forward to attending more events and becoming even more involved in the years to come!
Mary & Craig (Hope’s Parents) Montgomery County Pennsylvania