Strong & Rare Parenting

Feauturing Cristina Rosa Vargas, Strong & Rare Mama, Paralegal, and Award winner of the Sonofi 2022 torch awards. She has been featured in Rare Revolution magazine and had a pending article with Upstate medical. She is a mama into civic action as she spreads awareness of CLN2 disease. She is working on a petition to support FDA-approved medication for her son's diagnosis. As she continues to be a strong RDLA advocate she is striving to become a lawyer to support the Rare Disease Community. 

Show highlights: 

Learn more about the work Cristina is doing by  visiting the following links 

Dr. Ann Marie is the founder and president of I’MPOWER Education Services LLC, an education service that focuses on bridging the gap between parents and schools. She created CORE In-Home Tutoring to service K-12 students in the core subjects. She has worked as a teacher and administrator in K-12 public and private schools. Dr. Ann Marie worked as an educational specialist for the MA Department of Education. She is an expert in providing training in fostering social-emotional competencies in classroom learning; SPED parents and the IEP (individual education process); preparing your child for formal school; social-emotional learning in the classroom; social-emotional competencies and behavior. She strongly believes that parents are a key element in students experiencing the highest level of academic success within the educational system. Strongly committed to a vision of excellence for students with socio-emotional and academic needs in diverse school communities. 

Show Highlights: 

Social Media account to connect with Dr. Johns @impowereducation

To stay connected, visit me on Instagram (@Strongandrareparenting), and/or send me an email at info. strongeandrareparents.com

This episode #09 S&R features the Chamlee Family. Heather shared her family's Autism Journey, challenges, wins, and new business. 

Heather Chamlee and her husband and I live in the Southern California desert, raising 3 amazing neurodiverse children, running our own businesses & navigating the world of special needs parenting together! Our oldest, Ranger (7) is autistic and limitedly verbal, learning to communicate with an AAC device. He LOVES being outside in the elements and is fiercely independent & purely magical. Ryder (6) is also autistic and hyperverbal, using lots of echolalia and scripting to communicate. He LOVES to learn about EVERYTHING, is the best snuggler & so funny! Both boys are daring sensory seekers! Hayley (4) has some sensory sensitivities & speech issues that are currently being evaluated. She LOVES taking care of her stuffed babies (animals), playing with EVERYONE & is smart & sassy enough to take over the world one day if she wants! I am a proud mom & wife, and also a photographer, a cookie baker, a date night box creator & a kinda crunchy self-care enthusiast!

She started a company making at-home date night boxes for special needs parents. It's a project that is SO near and dear to her heart. Visit her Business page at https://morethanjustcaregivers.com/

In this episode David shares his story on his ultra-rare condition called Occipital Horn Syndrome – he was diagnosed with this at the age of 26 at Addenbrookes in Cambridge. He has been doing talks on rare diseases life for the last 8 years at various events and conferences globally. Covering many different areas, such as the science behind Occipital Horn Syndrome, what it’s like to go through all the education milestones when managing a complicated ultra-rare disease, how he has navigated employment with a rare disease; the diagnosis journey, and much more! For the last 4 years, David has been working for Rare Revolution Magazine - a magazine focusing on rare diseases in the UK. Through his role in also Business Development – he has met so many fantastic rare disease advocates and industry professionals from all over the globe. Alongside his work at the magazine and speaking, David volunteers for a cause close to his heart - Great Ormond Street Hospital. A famous pediatric hospital in London. David also joined Mitrofanoff Support last year as one of the trustees. David has been using a Mitrofanoff catheter since the age of 7, back in 1995, which was carried out by Great Ormond Street Hospital in London.

Welcome to Part II of Episode#04. Follow your momma's gut! 

In this episode, Bertha Guillen shared her journey of ABA with Santhi, shared her personal views on the controversies of ABA, what ABA has done for Santhi to support him, and one crucial factor that changed the trajectory of their life. This change was through self-advocating in her workplace to request ABA self-funded employer health plans. What is incredible is not only did she help Santhi but she was also an agent of change in the workplace for the rest of the employer group who also needed ABA service options in their medical health plans. 

Proud Strong and Rare Mama to three beautiful children, writer, advocate for a rare disease community on a mission to raise awareness, spread hope, and build a community together on chromosome condition called Koolen De Vries Syndrome (KVS). Becky shares her experience of being diagnosed with the rare condition, KVS, after her oldest son and now youngest daughter was diagnosed with the same condition. Becky has created a Facebook page called Mamas Heart and UK KDVS support group.