Testimonials
“Thank you, Project Change! That was the first time I have ever felt seen!” ~Dawn Fitzgerald, FD Patient age 50.
“FD/MAS can make you feel so hopeless and isolated. Project Change has given me a renewed sense of hope. Kellen isn’t alone in this fight. We truly gained another family, which I am forever grateful for. I am truly grateful for everyone who helped make this a success. I can’t wait to see everyone again!” ~Danny Modry – Mother to CFD Child
“This week was nothing short of amazing. I cried on the plane ride back. My heart is beyond full, and not only have I created a bond, a sisterhood with women who I felt like I have known my whole life, but with some strong amazing women who I know I share a common bond with….We will and I mean we will make a statement in the FD world…Let’s stay connected and encouraging throughout our FD journey,” ~Mother to 8 year old boy with CFD.
“I am so glad I pushed past my comfort zone and went to the Project Change event this weekend! I met some wonderful people, including meeting other with Fibrous Dysplasia like me! Thank you for having me and accepting me. I made some life long friends. Together we are stronger. Ya’ll forever hold a place in my heart and I can’t wait to do it again next year!” ~Dani Marly, FD patient age 50.
“Fantastic weekend with so many supportive champions struggling with FD. Couldn’t have asked for a more impactful weekend! Thank you again Project Change Family!” ~Andrew Lee, age 35 CFD.
“When we first began Project Change, our family felt lonely and isolated. Having a rare disease is difficult because you cannot find others like yourself easily.
Project Change connected us to the fibrous dysplasia community and enabled us to introduce our son, Cash, to other children who have this condition. I will never forget the moment when Project Change connected him to another child his age in Chicago, IL. Cash received this child’s cell phone number and before he dialed to speak to him, he looked up at me and said, “Mommy, I can’t wait to talk to someone like me who has fibrous dysplasia.” His hands were shaking with excitement and it was a surreal moment for me, as his mother, to see him connected with a new friend that shared his disease. As Cash continues to face the many challenges in his journey, I now know that we are not alone.
I am forever grateful and committed to Project Change.” ~Juliet.
“My son, Gunnar, and I made the best decision ever when we accepted the invitation to a 5K for Project Change earlier this year. I had no idea what to expect, as Gunnar and I hadn’t had the opportunity to meet anyone with this disease before. This weekend allowed us to meet other children and parents affected by Fibrous Dysplasia. From the moment we showed up, I felt the support and community that I had not had since Gunnar’s diagnosis in 2021. We have a ton of family and friend support but there’s something to be said about being able to go through this journey with other people who can truly understand it. I’m so grateful for Project Change and everything it has brought to my family. I’m so excited to see the impact Project Change will make moving forward!” ~Emily H.
“We had an amazing time today and could not get over all the support we had for our boys. We are already excited for next year and will be bringing more family… I held back tears all day being around other people who know exactly how we feel…”. ~Mother to Tobias, child with FD/MAS
OUR IMPACT
“Hello, my name is Danny and I have a rare bone disease called Fibrous Dysplasia (FD). FD is a disorder where normal bone and marrow is replaced with fibrous tissue, resulting in formation of bone that is weak and prone to expansion as a result. Most complications result in fracture, deformities, functional impairment, and pain. FD can effect one bone (Monostotic), multiple bones (Polyostotic), or all bones (Panostotic). I was diagnosed at the age of 8 with Monostotic fibrous dysplasia. Mine is located in the Occipital Bone and Clivus. After having a Nuclear Bone Scan, the doctors determined I have polyostotic fibrous dysplasia. Now, I have it throughout my entire skull, face, discs in my neck, hips, and pelvis area. I have had 8 different head surgeries. First one was at the age of 14 and the last one was at the age of 50.
On Facebook there is a group for FD. It’s a community of people who have FD or a loved one with FD. It was in this group I saw a post from Juliet Thomas for an event called “Project Change”. Her son, Cash, was diagnosed with Craniofacial Fibrous Dysplasia. Cash came up with name of the non profit organization Project Change. This organization is about bringing awareness to Fibrous Dysplasia but is also about bringing awareness to how individuals treat other with disabilities. He chose “Change” because of how FD can cause “changes” in ones appearance. I was fortunate enough to be able to attend the first annual Project Change event. During this event I apologized to Juliet because I couldn’t eat my meal due to my dentures not fitting properly. My dentures were too big and they would cause me to choke on my food. I lost my teeth at the age of 30 from the FD. Juliet took it upon herself to reach out to her dear friend, Robbie, and shared my story with her. Robbie’s husband is a Prosthodontist, owner of Piedmont Dental in Troutman Robbie shared my struggles with Dr. Carnaggio. He said, “I want to try and help her”. He is one of the nicest people I have ever met. When he asked me what my goals were, I immediately responded with, “I want to be able to eat in public without being stared at and I want to be able to enjoy foods I haven’t been able to eat for the last 20 years.” Lastly, I stated, “It would help my self-esteem.” Dr. C said he believed he could help me with all 3 of my goals.
If it wasn’t for Project Change and Piedmont Dental none of this would even be possible. If you are looking for a nonprofit to support, please consider Project Change as they are making a big difference in individuals’ lives as they create a standard of acceptance, love and hope for all, regardless of circumstance, disease, or any other uncontrolled influence. Also if you are looking for a new dentist, I highly recommend Piedmont Dental in Troutman. Dr. Carnaggio and his staff are amazing and will welcome you with warm smiles. Their staff is friendly, dedicated and energic. Their team is committed to working with you and your family to create a positive experience every time you visit their practice.
I just can’t thank everyone enough. I am truly looking forward to having teeth again after 20 years. Thank you Dr. C for taking the time to understand my needs and making my dreams become a reality.”
Sincerely, Danny Marley
