Charities Supported by Made By Mer
Living with EDS and POTS has given me the opportunity to meet and work with people who spend their lives giving back. It has shaped how I feel about my future as I know that helping others in some way is an integral part of my career goals. There are so many charities that directly impact my life, and I have chosen four to support through Made By Mer.
Palmetto Animal Assisted Life Services
In September 2012, my mom and I met with PAALS and told them about my challenges with EDS and POTS. We then began a process of working with PAALS service dogs in training and waiting for the right match for my life partner. In January 2014, I was placed with Sami, and he has changed my life. He provides me with stability when I am dizzy, picks up things that I have dropped, goes for help when I need it, and keeps me company when I'm sick. Sami helps to keep me out of my wheelchair and gives me the independence to be a normal teenager.
Over the past 4 years, PAALS has become like family, and they are truly an inspirational organization to me. They change the lives of veterans with PTSD, children with autism, those disabled by accidents and those disabled with illnesses. 91 cents of every dollar donated to PAALS goes back into their program - which means they have a lot of volunteers who work tirelessly 24/7. I've been raising money for PAALS since 2012, and I will always continue to support this life-changing group.
Read more about PAALS at www.paals.org.
The Coalition Against Pediatric Pain
TCAPP is a non profit committed to improving the quality of life of people like me who live with chronic pain. Not only do they raise awareness by educating and provide resources to families and professionals, they provide a forum for those of us suffering with chronic illnesses to communicate with each other.
Several years ago, I became a TCAPP Ambassador - which means I'm available to talk with others that are newly diagnosed with EDS or POTS. When I first began my journey, it was helpful to meet others with similar circumstances, and it's always great to talk with a friend who just "gets it." TCAPP is an amazing organization and I want to continue to give back.
Learn more about TCAPP at www.tcapp.org.
I have Postural Orthostatic Tachycardia (POTS) which is a form of dysautonomia. It isn't rare, in fact 1 in 100 teens develop POTS with 85% of them being female.
However, most doctors are not familiar with POTS and it can take a long time to get a diagnosis. Another issue with dysautonomia is the lack of research funding to find ways to end or combat the illness. I'm a big fan of Dysautonomia International as they do a lot of things to raise awareness in both the doctor and patient community and are key players in advocating for research funds.
Thank you Dysautonomia International!
Learn more about DI at www.dysautonomiainternational.org.
I love Global Genes because they support all of us with any kind of rare disease. The consequences of a rare disease are many - schools don't know about it, doctors aren't well educated, and there isn't a lot of money going into research and cures. Did you know that there are over 7,000 rare diseases and that 1 and 10 people are affected by one? And, 80% of rare diseases are caused by faulty genes - just like mine - Ehlers Danlos Syndrome.
With Global Genes supporting the entire rare disease community, it brings unification and strength to each one of our patient populations.
Learn more about Global Genes at www.globalgenes.org.