New episode of Butterfly Talk ready to view! Today I am sharing what are my favorite “Special Needs Parenting” Movies, plus I share which movies are available to watch specifically about EB. Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for watching! Post Views: 182Read More →

New episode of Butterfly Talk ready to view! It’s EB Awareness Week! My guest today is Jodie Gillon, who is the VP of Patient Advocacy and Clinical Affairs for Abeona Therapeutics and EB-101. To Enroll in EB-101: https://www.abeonatherapeutics.com/cl… Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for watching! Post Views: 256Read More →

New episode of Butterfly Talk ready to view! October 15th is Pregnancy and Infant Loss Awareness Day (as a whole, the month of October is also). Why this day is so important to me and why it’s linked to EB Awareness. My story and several tips on coping. Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for watching! Post Views: 220Read More →

New episode of Butterfly Talk ready to view! In this episode I encourage all Mamas out there to take care of yourselves!! This includes Nutrition, Exercise, Sleep, Pamper Yourself and Your Mental health is also super-important!!! Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for watching! Post Views: 202Read More →

New episode of Butterfly Talk ready to view! In this episode I talk about the Healing Power of Humor. I’ve used it a lot with Nicky and also my husband. We try to laugh as much as we can. It helps!! Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for watching! Post Views: 205Read More →

New episode of Butterfly Talk ready to view! In this episode I talk about the bandages and miscellaneous products that we use to take care of Nicky’s wounds and well-being.Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for watching! Post Views: 376Read More →

New episode of Butterfly Talk ready to view! In this episode I talk about depression. Special Needs moms cope with long-time depression. This ongoing type of depression is very different from other forms of depression…Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for watching! Post Views: 425Read More →

New episode of Butterfly Talk ready to view! In this episode I talk about coping strategies for Special Need Families and also for those stuck at home due to COVID-19.Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Post Views: 365Read More →

For the past several months I’ve been hosting a show called “Butterfly Talk” (radio: BlogTalkRadio/podcast: iTunes) where I interview different personalities that are working toward EB Awareness or offer information in regards to EB at large. My mission is to get these individual’s EB awareness efforts recognized, mostly because EB being a rare, often called an “orphan” condition, it gets little airwaves. This is my effort in raising consciousness about EB at large. Whether I am actually making a difference, I don’t know. But I won’t stop. Ever. My latest guest was Jodi Champagne, which is a well respected photographer and good friend of mine, who did the Photographic Documentary called “Courage Under Wraps“, which depicts my son Nicky’s life with EB. When Jodi became aware of my son’s condition she wanted to help in some way and she felt a book which depicts the ins and outs of everyday life of myRead More →