Recording-artist/songwriter/producer Dina Fanai AKA AVALONA, released Legacy today across all platforms
Legacy was written as an anthem for patients with Charcot-Marie-Tooth disease (CMT), one of the world’s most common inherited neurological diseases. CMT causes progressive deterioration of peripheral nerves that control sensory information and muscle function of the foot/lower leg and hand/forearm leading to significant problems with movement, touch, and balance as it advances. CMT can vary greatly in severity, even within the same family and can cause severe disability and in rare instances, even death. CMT affects approximately 1 in every 2,500 people. Globally, more people have CMT than have multiple sclerosis or ALS, including 150,000 Americans. There are no treatments or cures for CMT; 3 million people around the world afflicted with the disease are forced to watch as their bodies slowly deteriorate.
Ms. Fanai learned about CMT through her friend, CMTRF Board member Peter deSilva. Mr. deSilva has CMT and comes from a large family, many of whom have CMT as well. His sister uses a wheelchair full-time because of CMT. Mr. deSilva himself is now beginning to experience more rapid decline as he ages. Mr. deSilva has passed CMT down to his youngest daughter, Sarah.
Mr. deSilva wants his legacy to be an end to CMT for future generations. After meeting Ms. Fanai and realizing their alignment of life goals, they embarked on a partnership to raise awareness and resources for CMT through music. After many conversations with Mr. deSilva and with funding from the deSilva Family Foundation, Ms. Fanai created Legacy, an anthem written for those suffering with CMT. They wanted Legacy to convey a positive, uplifting message to the strength of those who suffer with CMT, and to be an inspiration of hope as we seek treatments and cures.
“I am the voice, I have the choice, I am the change, to pave the way…”
Ms. Fanai’s lyrics from Legacy embody Mr. deSilva’s approach to life. As a successful business leader who has held senior leadership positions at TD Ameritrade, Scottrade, UMB Financial Corporation and Fidelity Investments, Mr. deSilva knows how to seize on opportunities for improvement. He is also a long-time philanthropist and social activist, leading campaigns for the CMT Research Foundation, The United Way, The YMCA, The American Red Cross, and Park University to name a few. Philanthropy, activism and making the lives of others better is in his blood.
In 2020, the time came to turn his activism, fundraising and personal philanthropy toward ending his family’s CMT. He is determined to stop the progression of CMT for Sarah ending the progressive disability that he has personally experienced.
“50 years ago, when I was diagnosed with CMT, the doctors told me that there would be treatments and even possible cures in the near future. Here we are 50 years later and there are still no treatments and cures. 50 years is long enough for anyone to have to wait. Now is the time to mobilize and to get this done for all who suffer from CMT,” Mr. deSilva recalls.
Mr. deSilva joined the board of directors for the CMT Research Foundation upon his leaving TD Ameritrade, and immediately committed to raising $10 million to end this disease. Knowing that few people have heard of CMT, he faced a greater challenge – how do you tell the world about CMT in a way that inspires people to be a part of the solution? From this question, Legacy was born.
The partnership with Ms. Fanai and Mr. deSilva created Legacy and continues to bloom. Mr. deSilva’s hope is that Legacy inspires you to learn about how you can end CMT.
Dina Fanai is an award-winning recording artist, songwriter, producer, storyteller, and activist. She is the creator and artist behind AVALONA. The music of AVALONA has already reached a million-plus streams this year and is part of a much larger revolutionary Immersive Musical, focused on mental health awareness and empowerment of the feminine. Dina has performed with, produced, arranged, and written for artists such as Trans-Siberian Orchestra, Foreigner, Jackie Evancho, Il Divo, Tina Turner, and Rocktopia on Broadway. Most recently she arranged and produced the music and filming for the Nurse Heroes Hispanic Star Choir with a special introduction by Jennifer Lopez. Through her companies, One Vision Music and Power of Music Global, she continues to produce concerts and recordings supporting a wide variety of causes and dedicating her life to using music to create positive change in the world. @avalonamusic https://linktr.ee/avalonamusic
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