September 2nd, 2022
The Longfellow Bridge in Boston, MA, lit up in blue today in honor of Leukodystrophy Awareness Month. Just days earlier, Governor Charlie Baker issued a proclamation recognizing September 2022 as Leukodystrophy Awareness Month.
BOSTON, MA - Leukodystrophy Awareness Month activities are underway in Massachusetts this September! Tonight, the Massachusetts Department of Transportation lit up the Longfellow Bridge in Boston blue, since blue is the color of leukodystrophy.
Additionally, Governor Charlie Baker issued an official proclamation recognizing September 2022 as Leukodystrophy Awareness Month in Massachusetts. This is the second year in a row that this recognition has been bestowed. Last year, the proclamation was honored at the request of an MA family impacted by metachromatic leukodystrophy. This year, Melanie Rumbel, who works for Maria Kefalas under Cure MLD and the Leukodystrophy Newborn Screening Action Network, applied for the proclamation. Sure enough, it was granted for the second time.
Leukodystrophy Awareness Month presents Massachusetts with the opportunity to acknowledge, hear, and take action in support of the young children and their families who face the devastating effects of this group of rapidly progressive and neurodegenerative rare diseases.
In its most severe and common form, leukodystrophy causes young children to lose the ability to walk, talk and interact with the world around them. Sadly, 50% of these children with the most severe form of the disease will die within 5 years of disease onset. Caregivers are left with no real options other than palliative care, while also facing an enormous emotional and economic burden.
In honor of the families that have fought or are currently fighting one of these devastating diseases, Governor Charlie Baker has designated the month of September 2022 Leukodystrophy Awareness Month in Massachusetts to encourage increased education and knowledge about the importance of early screening, diagnosis and potential intervention for these rare, genetic conditions.
The proclamation text includes information about three specific forms of leukodystrophy: metachromatic leukodystrophy (MLD), Krabbe disease, and adrenoleukodystrophy (ALD). These three subtypes were chosen because, of the 50+ different kinds of leukodystrophies, these diseases are the only ones that are on at least one newborn screening panel in the United States. For example, New York is the only state screening for MLD in a pilot program called ScreenPlus. Currently 10 states screen for Krabbe, and 29 states plus Washington D.C. screen for ALD.
The Leukodystrophy Newborn Screening Action Network collaborated with Cure MLD and the United Leukodystrophy Foundation to request proclamations from other states around the US as well. Thus far, these requests have been accepted in 10 states! Advocates hope to see continued recognition throughout the month of September.
The following states have honored September 2022 as Leukodystrophy Awareness Month so far, thanks to passionate family advocates:
Interested in advocating for and spreading awareness of leukodystrophy? Contact the Leukodystrophy Newborn Screening Action Network at email@example.com to inquire about opportunities. And see below to read the full text of the Massachusetts proclamation.
The Commonwealth of Massachusetts
Designating September 2022 as “Leukodystrophy Awareness Month.”
WHEREAS, some rare diseases, or diseases that affect fewer than 200,000 people in the United States, are often severely debilitating and many have no effective treatments; and,
WHEREAS, Leukodystrophies are a group of rare, genetic disorders that affect the white matter of the brain and nervous system affecting an estimated 1 in 7,000 people; and,
WHEREAS, For MLD, the incidence is estimated to be 1 in 100,000 births in the United States; and,
WHEREAS, For Krabbe, the incidence is estimated to be 1 in 100,000 births in the United States, and
WHEREAS, For ALD, the incidence is estimated to be 1 in 21,000 male births in the United States.
WHEREAS, Newborn screening and early diagnostic measures are important to ensure that leukodystrophy families have an opportunity for timely diagnosis and guidance from a healthcare professional;
WHEREAS, Improved awareness and education around Leukodystrophies will increase parental awareness of newborn screenings for leukodystrophies;
Now, therefore, I, Charles D. Baker, Governor of the Commonwealth of Massachusetts, do hereby proclaim September 2022 to be,
LEUKODYSTROPHY AWARENESS MONTH
and urge all of the citizens of the Commonwealth to take cognizance of this event and participate fittingly in its observance.
Given at the Executive Chamber in Boston, this first day of September, in the year two thousand and twenty-two, and of the Independence of the United States of America, the two hundred and forty-sixth.