Joshua Frase Foundation supporting Centronuclear and Myotubular Myopathy

The Joshua Frase Foundation would like to honor all the mother’s on this special day, especially the mother’s who care for these medically fragile children. We see you, and we honor you.
*** this is Tamires and Mateus from Brazil *** 💙❤️

Please join us as we pay our respects for one of our MTM warriors and his family. Oisin was with us for a short but meaningful journey.

While giving Oisin’s eulogy, his father said that “when he (Oisin) looked at you, he would stare right into your soul, and it was the most heartwarming experience every single time.” His father also mentioned his bravery, and his gentleness and how much he loved his twin brother.

Please be praying in the coming days for this precious young family in Ireland, and may we never forget, there is strength in numbers.

Always for the Children.

Sending our deepest condolences, love, strength and prayers on the road ahead. ❤️🙏

The Joshua Frase Foundation

We ask that you join us as we pay our deepest condolences to one of our MTM family’s. Our community has lost another warrior on 3/29/ 24. Please lift his parents in prayer, Pablo Figueroa and Sara Pallone at this time of significant loss. Thiago was 7 years of age.
Paul and I both had the honor to meet this precious child several years back. I shared with his mother, Sara, today that her pictures and posts of Thiago would always bring me deep joy on difficult days. Thiago’s smile was truly captivating. His love for God's creatures of the sea was exceptional. He knew every name of every sea creature. His love for life was contagious. Thiago’s parents cared for him with very little help, yet they always seemed to live life to the fullest. We believe Thiago has received his completed healing. The Joshua Frase Foundation will continue to honor these precious children.

Always for the Children.

The Joshua Frase Foundation and its board members🙏❤️

Received this image from a colleague today at the MDA conference.
She shared that our story, was mentioned several times today.

All that I did, and all that I am is because of you my son! ❤️‍🩹

Your life and legacy continues to be cited in the Life Science Space. 🙏

Son, we continue to share your of book of Hope and Inspiration.

“Game Changer, a boy, a dog and a cure. “

Link in bio

Always for the children

Happy Birthday Son - Change Started with You! 🎉 - https://mailchi.mp/joshuafrase/happy-birthday-son-change-started-with-you

Celebrating the incredible legacy and impact of our dear son. Join us in remembering his life, embracing cherished memories, and supporting his sister's tribute on Apple Music, Spotify, and all other streaming platforms. "Just Friends" Isabella Frase 🌟

We are humbled once again that Joshua’s story has won its second award. Our book, “Game Changer, A boy, A dog and A cure,” has won a Bronze medal in the Readers' Favorite annual Book Award
for the non-fiction biography category. This is a nationally voted upon award following recent gold metal in the category of autobiography / biography/ memoirs at the Florida Authors And Publishers Association (FAPA). *** if you purchase from Amazon, please leave a review ***(amazon - Alison Rockett Game Changer)

Game Changer https://a.co/d/fvlfajt

This one’s for you Joshua! Your book won a gold medal in the 2023 Presidents Book Awards for “Best New Authors” at the Florida Authors And Publishers Association (FAPA). The president of FAPA, who was our editor, wanted us to know “ it was my favorite book ever to edit and I’m so excited you won.” She also shared, “I’m picturing Joshua in Heaven so proud right now.”

We will continue to share your legacy of pushing beyond perceived boundaries in regenerative medicine. We miss you son! ***gamechanger.global
Or Amazon “Game Changer “ or ( Alison Rockett or Paul Frase )

12/24/22 Dear Son,

Purpose is the word I keep hearing when I reflect on your life. You were a lover of people, your love of history, life and the knowledge of it ran deep. Your mind was like no other. The ability to hold a conversation for an hour on any given topic was common and few could beat you at chess.

When I think of you I remember the purpose and passion you exhibited as you faced each day.
Even in moments of life and death you faced life with such valor. Our eyes would lock- in in these critical moments your will to survive was indescribable. Even in your physical frailty, you displayed tremendous courage, you were tough. You never asked “why me,” you never complained once in your 5800 days here on earth. I so miss your dry wit! Your foundation and its research efforts were a priority for your peers and your dreams. I will continue to share who you were joshua, and the impact your life has made. Uncle Shaun summarized you best when he would say, “ your heart was pure“.

My words for 2023 will be “meaningful purpose.” I will continue to pursue life with meaningful purpose in your honor son as your legacy continues to have a ripple effect across continents and generations to come.
Until we meet again. I love you ..Mom

*** so glad we took this last family picture 20 days prior to your passing …even if you argued with me about this the whole photo shoot…lol

Our Goal; Lasting Change -The journey has been long, and the fight is not over! You have trusted us before: we need your investment in our vision, fortitude and resolve now more then ever. Always for the children. https://mailchi.mp/joshuafrase.org/our-goal-lasting-change-8742066

Please consider joining Paul Frase, Ruari and the Maguire family as they honor their two sons and brothers who passed from this fatal disorder.
To support the Joshua Frase Foundation supporting Centronuclear and Myotubular Myopathy you can donate through FB or go to pleasedonate.org

The fight is not over!! These children are worth the fight! 🙏♥️♥️

Looking into the eyes of a miracle puts everything in life into perspective! So wonderful to meet Caleb and his mother face to face. I connected with Angel when Caleb was 3 months of age. What an amazing journey it has been these last 4.5 years these children are worth the fight.

No parent should face the loss of a child. The pain is gripping and beyond measure. We think of these children in our community as our own and one of our precious heroes Logan passed this week. I was humbled to know that I was the first call they made to share this tremendous loss. We’ve known this beautiful family for years and I’ve always felt that Logan’s precious spirit was so similar to our Joshua in so many ways. He was a prankster, smart, loved his siblings, and never complained. It was so fitting that this beautiful child came from the union of Kathleen and Brian, two of the most wonderful people we know. Please lift this family in your prayers as they learn to find peace in the memories and live with a loss that will forever be felt.

All our love,
Alison Rockett and Paul Miles Frase, and the Joshua Frase Foundation supporting Centronuclear and Myotubular Myopathy Boards 🙏♥️

Brian Forbis
Kathleen Forbis

Dear All,

Every child loss is unimaginable and unbearable, and my prayers go to this family in their time of suffering. I am so honored to have been able to be a part of the conglomerate of organizations, including ZNM - zusammen stark e. V. and Tanner Pharma Group that allowed little Wilson and his family to enjoy his last two years together at home- making memories that they will treasure forever. At a time when ventilators were a rare commodity, we made it possible for this family to acquire one. Because nothing is more precious than each moment they spent with him.

Thank you to all of you who support our mission, and please keep Wilson’s family in your thoughts and prayers during this most difficult time.

Sending our deepest condolences and love at this time.

The Joshua Frase Foundation supporting Centronuclear and Myotubular Myopathy

Sending our deepest condolences to one of our Brazilian families at this time of tremendous loss, as Heaven gained another one of our warriors. It is evident that Michael’s presence and smile brighten those who had the honor and privileged to know him. Over the last 25 years we have honored these children’s lives knowing their lives were not in vain. Please lift this family in your prayers as the loss of a child is beyond measure.

Always for the children.

It's now easier to send Joshua Frase Foundation supporting Centronuclear and Myotubular Myopathy a message.

SOLD OUT! Our fundraiser at The Alhambra Theatre and Dining has sold out in record time. If you would still like to help us fund critical research to eliminate Centronuclear and Myotubular Myopathy, please go to our website https://www.joshuafrase.org/donate.php or use the QR code below.

Dear Global Familes,

Please consider joining the upcoming family conference in Germany. I had the honor and privilege to attend several years back.

Join in the International Family Conference on CNM 2022 held in Germany

The German CNM Patient Association ZNM – Zusammen Stark! e.V. warmly invites all people with CNM around the world to participate in the International Family Conference on Centronuclear Myopathies. The Conference will take place from May 26th to 29th, 2022 in Bad Nauheim, close to Frankfurt in Germany.

There will be a good mix of scientific and medical lectures on potential treatments for CNM and workshops on care and everyday life. An exciting kids and teens program is offered throughout the whole conference. On Sunday we will have the opportunity to spend time together at a family excursion.

All lectures on Saturday will be simultaneously translated into English. We are very happy to be able to reach even more people through this.

All information about the event, the hotel, and of course the registration can be found here.

The final agenda will be finalized over the next few weeks. The information will be updated in the link above.

We are looking forward to the long weekend with our big CNM family!

https://www.znm-zusammenstark.org/en/2022-en/

🇩🇪 Es ist soweit 🥳 Die Anmeldungen für unsere diesjährige ZNM-Familienkonferenz von 26.05. - 29.05.2022 sind offen!

Zur Anmeldung geht´s hier:
https://forms.office.com/r/L8CmWb450r

Bitte beachtet, dass die Zimmer separat beim Hotel gebucht werden müssen. Mehr Infos findet Ihr hier:
www.znm-zusammenstark.org/de/2022-badnauheim

In den kommenden Tagen erfahrt Ihr hier, was Euch bei uns erwartet :)



🇬🇧 Here we go 🥳 Registration for this year's CNM Family Conference from 26.05. - 29.05.2022 is open!
To register click here:
https://forms.office.com/r/L8CmWb450r

Please note that the rooms have to be booked separately at the hotel. More information can be found here:
https://www.znm-zusammenstark.org/en/2022-en/

In the coming days you will find out here what to expect :)



🇪🇸 Aquí vamos 🥳 El registro para la Conferencia de familias sobre CNM de este año del 26.05. - 29.05.2022 está abierto!
Para registrarse haga clic aquí:
https://forms.office.com/r/L8CmWb450r

Ten en cuenta que las habitaciones deben reservarse por separado en el hotel. Puedes encontrar más información aquí:
https://www.znm-zusammenstark.org/en/2022-en/

En los próximos días descubrirás aquí qué esperar dela conferencia :)



🇳🇱 Het is zover 🥳 De inschrijving voor de ZNM Familieconferentie van dit jaar van 26 mei tot 29 mei 2022 is geopend!

Om je in te schrijven, klik hier:
https://forms.office.com/r/L8CmWb450r
Let op: de hotelkamer(s) moet je zélf boeken bij het hotel.

Meer informatie vind je hier:
in het duits: www.znm-zusammenstark.org/de/2022-badnauheim
in het engels: www.znm-zusammenstark.org/en/2022-en/

De komende dagen kom je hier te weten wat je kan verwachten.

Light it up for rare! We know so many of you find extraordinary ways to honor our warriors, today and everyday. Thank you for sharing this one with us!

Light it up for Rare disease!

Sharing Katherine’s post for rare disease day awareness

My boys battled/battle a rare disease called X-linked Myotubular Myopathy. MTM is a genetic disorder that affects all the skeleton muscles. Because it's an X-linked disease, males are affected by it, and females are carriers. MTM comes in 3 forms: mild, moderate, and severe. My boys were both diagnosed with the most severe form. Ryan, my firstborn, showed signs of the severe form. My second born son Raylan, he's experiencing more moderate symptoms.The life expectancy of this disease is one year but with advanced medical technology, these amazing kids are living way beyond that expectancy.

Monday February 28 is rare disease day. We would love to celebrate our families and honor this community on such an important day of awareness.

We are looking for you to get creative and submit content we could share on this page. If you could create a video (1 minute or less) about what rare disease day means to you, or about your rare disease warrior, we would love it! For videos please send us a direct message with a link to Dropbox or Google drive to access your video.

If video isn’t your thing, but you still want to participate- feel free to send something creative or meaningful and we will try to incorporate it!

Thank you!

The look on Kavi’s face says it all…it is a look of peace and love.

We always say that losing one of our MTM warriors brings with it a pain that can be unbearable, but we also experience from our children a joy that is unfathomable.

Kavi gave his family unfathomable joy, and he spread his love and peace throughout the community.

As Kavi’s mom Kate shared with me, their lives were full of joy, family, friends and adventure.

Kavi is dearly missed. Please keep the Kavster’s family in your thoughts and prayers at this time of great loss.

Sending our deepest condolences, The Joshua Frase Foundation
Kate Gray

As the curtain fell on 2021, so did it fall on the life of a bright star in our community.

At 25 years old, Kyle Grant took his final breaths yesterday, on New Year's Eve. He made his final bow to this world on a day filled with fireworks and cheers, befitting of his grand soul and the passion with which he lived his life.

As we wake this morning to a New Year and step bravely into 2022 bear in mind what Kyle taught us in the way he lived. Don’t let the world define your boundaries. Strive for a greatness in what you do and accomplish that which makes your heart sing with joy, and that will reverberate to those around you. Don’t be afraid to dig in and take risks to reap big rewards; get your hands dirty every once in a while. Learn to lean on those you love both in your need and in your joy, together we can accomplish great things. And love, love with all your heart and do so without fear.
Let us keep Betsy and Scott in our hearts today, and share with you a beautiful message from them about Kyle and his life...

“The world just lost the strongest and most loving man that I have ever or will ever know; Kyle Grant. Kyle passed from this world today, 12/31/2021, just hours ago. Kyle lived a full life despite the many difficulties faced by any boy or young man with MTM. Having hit the age of 25 just a few months ago, he proved to us and to so many others with his disease that really anything was possible. Kyle’s strength came from his heart and his mind, where there were never any limits to what he could do. It didn’t matter how impossible it seemed, he wanted to try to do it anyway. He put his heart and soul into what he was doing, whether that was his love of anything with an engine, a watercraft, or something he could build. One highlight in his life was when he could mow the lawn. A teenager, always in a wheelchair, yet driving a riding lawnmower! He was a sight to behold, and he knew it! With his ventilator bungee-corded to the floor of the mower, he was so proud of being able to mow our lawn and contribute to the family! (And we were so proud of him!). Go-Karting, 3-wheeling on the Big Red, going on a jet ski, and our many boat rides over the years were all things he loved and we loved doing with him. Kyle was a member of the Vermont Chargers Power Soccer team. He loved the competition on the court, the team work, and the joy of winning! Summertime brought the demolition derby and tractor pulls, which he loved to watch. Riding in our boat, at top speed, was his absolute top favorite summer activity! We rigged up a special seat for him that kept him comfortable and safe. Model cars and airplanes were a favorite pastime. As he became weaker over the years, what he couldn’t do with his hands, he would direct others around him to accomplish. Every part had to be meticulously painted before assembly. He was also an aviation history buff. Apollo 13 was one of his top favorite movies, along with Top Gun, and the Marvel comics movies. A super-hero in his own way! He was loved by many people in our community. He loved having close friends come by to visit, including several classmates that still stayed connected. One of his nurses, a caregiver since his birth, became a full-time caregiver for him in the last two years of his life. Our hearts are heavy with loss. He is our son, who also had become our constant companion and friend. We know beyond all doubt that he is running free, in Heaven, meeting loved ones who have gone before us, including an older brother, a baby niece, and also 3 grandparents.”

Our deepest condolences to the Grant family at this time of tremendous loss.

Lovingly, The Joshua Frase Foundation
Scott Grant Kyle Grant Betsy Grant