Friends and Families Muscular Disorders Foundation is a 501(c)3 not-for-profit organization dedicated to increases the quality of life and independence of children and adults with any type of neuromuscular disorders, MD, CP, Lupus, MS, ALS,Parkinson plus over 100 other disorders/diseases well as empowers their families, through advocacy, education, and medical financial assistance through out New York State.

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We are very excited to announce our 2022 -2023 Ambassador.

Lennox Daniels was born into a loving, blended family, (complete with four excited siblings) to Siobhan Grevelding and Junior Daniels of Syracuse, New York. After a mere 23-week gestation, Lennox made his early entrance into the world in his family’s living room with the help of dad! Lennox would spend the first five months of his life in the NICU.

At around ten months of age Lennox began to have prolonged seizures. The prolonged seizures became a common occurrence, and Lennox would soon find himself hospitalized a few times a month. It was at this time, that Siobhan and Junior would learn that Lennox was a candidate for genetic testing. This testing would eventually determine that their young sons’ seizures were a result of the pathogenic gene variant SCN1A, and Lennox was diagnosed with Dravet Syndrome at 1 year of age.

Dravet syndrome is a rare, drug-resistant epilepsy that begins in the first year of life in an otherwise healthy infant. It is lifelong. Symptoms may include Frequent, prolonged seizures, Behavioral and developmental delays, Movement and balance issues, Orthopedic conditions, Delayed language and speech issues, Growth, and nutrition issues, Sleeping difficulties, Chronic infections, sensory integration disorders, and autonomic nervous system problems.

Despite his difficulties, Lennox is a joyful, beautiful little boy who loves to play with his siblings, blocks, balls, trucks, and cars. He is currently enrolled in speech, play and physical therapies.

FFMDF’s goal is to assist Lennox and his family in the acquisition of a Service dog. Service dogs have proven to be an invaluable, life-saving asset to those with physical and developmental difficulties. Along with the ability to alert the family when Lennox is having a seizure, a service dog would also provide companionship and support developmentally and emotionally. So, please join us in welcoming our newest ambassador Lennox, and if you can, give a little, help a lot

 

We are very excited to announce that Carly, our 2020 -2021 Ambassador will continue to represent FFMDF in our 2022-2023 year!

7 year old Carly Waddington is the daughter of Mark and Kim Waddington of North Syracuse, New York..

After birth, Carly was diagnosed with Down Syndrome, which is accompanied by low muscle tone.  Carly had received physical therapy along with occupational therapy, speech therapy, and a special education teacher through early intervention from 6 weeks old until 3 years old. 

Once Carly was in preschool, the North Syracuse Central School District continued her therapies for another 2 years. Carly was then enrolled in kindergarten, where she was in a full inclusion classroom.  

 

Friends and Families Muscular Disorders Foundation, Inc. is a non profit organization to honor those who have a muscular disorders raising funds and awareness through unique charitable events and actives.

To grant and award money to medical and educational intuitions for new programs We also assist other groups and individuals who are need of a helping hand due to financial difficulties through out New York State. A pair of leg braces a fixing a wheelchair all cost money. Many families have trouble affording these essential items because of the mounting cost associated with these diseases.

We assist those with the following disorders:

  • Alzheimer's Disease
  • Amyotrophic Lateral Sclerosis (ALS)?
  • Charcot-Marie-Tooth Disease
  • Cerebral Palsy
  • Friedreich's Ataxia
  • Giant Axonal Neuropathy
  • Hereditary Neuropathies 
  • Motor Neuron Diseases
  • Muscular Dystrophy
  • Neurological Sequelae Of Lupus
  • Parkinson's Disease

     and other muscular and neuropathies disorders

 

Friends and Families Muscular Disorders Foundation would like to take the time to give our sincerest thanks to those who have supported our cause!

 

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Martin, Harding & Mazzotti, LLP

Dougherty Funeral Homes

Sentsy

KB White Farm

Fidelis Care

Gutter Logic

Josh Chapman Allstate Agency

Wegmans

Tupperware

Nana’s Novelty Nook



Kneading Vitality

Tastefully Simple

Matilda Jane Clothing

Rector-Hicks Funeral Home

Hempworx

Vitalsigns

Mascots United

Color Street

USBORNE Books & More

Pampered  Chef

J & A Farm Market & Greenhouse



Avon Now

En’Flated Creations by Kizi

LuLaRoe

Animantha Creations

Greenlight

L’BRI

Thirty- one

Ruby Ribbon

Chasby’s Metal Décor

pawTree

HAPInss

TKT Insurance Agency

Norman Massry & Massry Family Tri City Rentals



Friends and Families Muscular Disorders is a 501(c)3 not-for-profit organization dedicated to increases the quality of life and independence of children and adults with any type of neuromuscular disorders, MD, CP, Lupus, MS, ALS,Parkinson plus over 100 other disorders/diseases well as empowers their families, through advocacy, education, and medical financial assistance through out New York State.

The articles, statements, and information by any authors or contributors on this website or links do not necessarily reflect the opinions or positions of the Friends and Families Muscular Disorders Foundation Inc. Web content supplied is of an informative nature and is not meant for self-diagnosis. Treatment varies among individuals and medical management must be individualized. If you are concerned about any aspect of your illness, we advise you to consult with your physician.

Friends & Families Muscular Disorders Foundation, Inc. Donor Privacy Policy Friends & Families Muscular Disorders Foundation, Inc.. does not collect, sell, distribute and/or publish any personal information pertaining to our donors, nor will Friends & Families Muscular Disorders Foundation, Inc. send mailings to our donors on behalf of other organizations.

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Friends and Families Muscular Disorders Foundation 

PO Box 45

Clifton Park New York 12065

EIN. # 11-3849592

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