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Diseases and Diagnoses on GiveForward

Jen faces chemo with superhero spirit

Posted on 10/29/2015 by admin

Jen Drew-Young didn’t wait until Halloween to dress up this year — she comes costumed to every chemo treatment. Jen grew up as a gifted athlete who excelled in every sport. But 18 years ago, her body started rebelling. Today, she has trouble standing without pain, and the simple joys of talking and laughing make... Read more

#EthansNotAlone Against Mental Illness

Posted on 7/30/2015 by admin

Ethan, 13, is struggling with mental illness. He has bipolar disorder, anxiety, OCD, and autism. According to his family, Ethan’s one of the most severe mental illness cases his doctors have ever seen. One doctor even noted that “of all the difficult cases, Ethan is not only in the 1%, but in the 1% of that... Read more

Coping with Terminal Cancer

Posted on 5/26/2015 by admin

On February 21st, 2014, Tracy DeBarmore Dorame learned she has terminal cancer: grade 4 glioblastoma. According to the American Association of Neurological Surgeons, glioblastoma “is a devastating brain cancer that typically results in death in the first 15 months after diagnosis.” 16 months after this tragic diagnosis, Tracy’s still fighting. Even though she’s outlived her initial prognosis, she... Read more

Take the Lyme Disease Challenge with us!

Posted on 5/6/2015 by admin

The Lyme Disease Challenge is a worldwide effort to bring awareness and funding to those affected by Lyme Disease. Like last year’s Ice Bucket Challenge, the Lyme Disease Challenge involves performing a quasi-uncomfortable action and daring others to follow suit—or pay up. How do you participate in the Lyme Disease Challenge? According to LymeDiseaseChallenge.org, there... Read more

Autism Awareness Month

Posted on 4/3/2015 by admin

Autism Awareness Month is in full effect at GiveForward. Yesterday, our team was decked out in blue to recognize World Autism Awareness Day. You probably saw Niagara Falls and the Empire State Building turned blue, too. But what does all this bluish awareness really do for autism? Autism Awareness Month provides a voice for kids... Read more

Myasthenia Gravis

Posted on 6/30/2014 by admin

Myasthenia is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness and fatigue of the voluntary muscle groups. According to estimate by the Myasthenia Gravis Foundation of America, Myasthenia Gravis affects 20 individuals out of 100,000. While there currently isn’t a cure for Myasthenia, effective treatments are available. Medications, IV treatments, and removing... Read more

Living with Muscular Dystrophy and Neuromuscular Diseases

Posted on 2/21/2014 by admin

“One of the main problems that came along with watching my condition deteriorate was ever-increasing fear of the unknown.” Neuromuscular diseases are rare acquired or inherited (genetic) conditions that affect some part of the neuromuscular system such as: The muscles The peripheral motor nerves (in arms, legs, neck and face) The neuromuscular junction where the... Read more

Hemophagocytic Lymphohistiocytosis

Posted on 1/31/2014 by admin

Hemophagocytic Lymphohistiocytosis, also known as HLH, is a disease that affects 1 in 50,000 births. According to Cincinnati Children’s Hospital, an experienced facility in the nation in treating HLH, “HLH is a rare disorder of the immune system in which too many infection-fighting cells are produced and activated, causing damage to organs.” Treatment is crucial... Read more

Wilms Tumor

Posted on 12/6/2013 by admin

Wilms tumor, or nephroblastoma, is a rare kidney cancer that predominantly affects children under 5. In most cases, Wilms tumor involves one tumor in one kidney (unilateral); however, the American Cancer Society states 5-10% of children with Wilms tumor have multiple tumors and about 5% of cases affect both kidneys (bilateral). According to the Mayo Clinic, “the... Read more

Goldenhar Syndrome

Posted on 8/14/2013 by admin

Goldenhar syndrome is a rare congenital condition affecting one in every 3,000-5,000 births. According to The Children’s Hospital of Philadelphia (CHOP), a facility that diagnoses and treats individuals with Goldenhar syndrome, the condition is characterized by hemifacial microsomia. Hemifacial microsomia “means the jaw and cheekbones on one side of the face are underdeveloped. This underdevelopment,... Read more

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