May is Neurofibromatosis and Lupus Awareness Month

With nearly 4 dozen (and growing) different causes/organizations Road Scholar Transport’s fleet is currently spreading awareness for, this May we would like to pay special tribute to two…Neurofibromatosis and Lupus.

Neurofibromatosis

As Road Scholar’s awareness program began to take off, Owner and President Jim Barrett received word that his grandson had been diagnosed with a tumor. Working with the Children’s Tumor Foundation, a non-profit, medical foundation dedicated to improving the health and well-being of individuals and families affected by neurofibromatosis (NF), Road Scholar created a new awareness tractor trailer, placing Barrett’s grandson’s picture on it. In 2019, Road Scholar added a new Children’s Tumor Foundation truck to our fleet, hitting the road to help spread the word and “Imagine the Possibilities.”

Neurofibromatosis, which affects 1 in 3,000 people, is a progressive tumor disorder which can be categorized into three distinct types:

-NF1: The most common, occurring in 1 in 3,000 children. Symptoms include (but are not limited to): noncancerous tumors, “freckles in the armpit, groin or other skin folds, learning disabilities, speech and vision problems, headaches and seizures, and short stature.” (1)

-NF2: Occurs in 1 in 25,000 people. Symptoms include (but are not limited to): “hearing loss, ringing in the ears, weakness, numbness, or tingling in an arm or leg, vision and speech problems, seizures, and facial numbness.” (2)

-Schwannomatosis: Occurs in 1 in 40,000 people, a new person diagnosed every 3 hours. Symptoms include (but are not limited to): “intense pain anywhere in the body due to tumors pressing on the nerves or tissue.” (3)

Those parents with NF have a 50% chance of passing the gene on to their child.

For more information on NF, visit the Children’s Tumor Foundation’s website at www.ctf.org/‎.

Lupus Awareness Month

In 2013, Road Scholar Transport rolled out a truck dedicated to Lupus awareness. Our Lupus truck was created in memory of Tanitha Kulsiri, who passed away from Systemic Lupus Erythematosus (SLE) in 2003 at the age of 22. Working with Tanitha’s mother, Nuj Fungladda, and the Tanitha Kulsiri Memorial Foundation, Road Scholar got to work designing a new truck.

When Tanitha passed away, Ms. Fungladda honored her by creating a book (Awkward Grace) of Tanitha’s compiled works during her last 10 years. She sent the book to Bridget Barrett, Road Scholar’s awareness truck designer, for inspiration. One of the narrative poems she came across contained a drawing (a sketch that Tanitha created in high school) which caught her eye. Loving the picture, Bridget decided it would be perfect for Road Scholar’s new awareness truck. So she cleaned up the image and added color, giving it brunette hair, the color of the woman’s hair in the poem.

Bridget then added the truck’s purpose to LIVE BEYOND LUPUS and incorporated TKMF’s website and logo (two flying pigs kissing, another artwork of Tanitha’s).

“As a mom, I could not accept the fact that I’ve lost her for no good reason,” said Ms. Fungladda. “There has to be a reason for this to happen and something good needs to come out of this terrible loss. Everyone at the foundation and her friends would like to express our deepest gratitude for all the support that Road Scholar has given us.”

Lupus is a “chronic, autoimmune disease that can damage any part of the body including the skin, joints, and/or organs.” (4) There are four types:

*Systemic Lupus Erythematosus

This is the most common form and ranges from mild to severe. Systemic Lupus Erythematosus can affect nearly every tissue and organ system. (5)

*Cutaneous Lupus Erythematosus

-Two-thirds of people with lupus will have cutaneous lupus erythematosus, which affects the skin and can cause rashes or sores on the “face, neck, or scalp or in the mouth or nose. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.” 10% of individuals with this type develop systemic lupus.(6)

*Drug-induced Lupus Erythematosus

-This type rarely affects the major organs, however, has many similar symptoms as systemic lupus. Caused by certain prescription drugs which include hydralazine, procainamide, and isoniazid, this form is more common in men. Once these medications are stopped, symptoms usually cease within 6 months.(5)

*Neonatal Lupus

-Rare and not considered “a true form of lupus.” Symptoms generally disappear after 6 months. Affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb. (7)

Lupus Facts:

-Nearly 1.5 million Americans have Lupus.

-Over 16,000 new cases are reported each year in the U.S.(8)

-90% of individuals with lupus are women between 15 and 44 years old.(8)

-20% of people with lupus have a parent or sibling with it.(8)

-While most people with lupus live a normal life span, 10-15% pass away prematurely due to complications. (8)

For more information on lupus visit http://www.lupus.org/.

Check out all of the great causes Road Scholar Transport is spreading awareness for here including our newest trailer to End Polio Now!

(1)https://www.ctf.org/understanding-nf/nf1/#

(2)https://www.ctf.org/understanding-nf/nf2#

(3)https://www.ctf.org/understanding-nf/schwannomatosis

(4)http://www.lupus.org/answers/entry/what-is-lupus