After sweeping changes were made by the Trump administration to the Department of Health & Human Services, one committee was terminated whose work would have saved 1 baby born every week in the U.S. from MLD or Metachromatic Leukodystrophy – a disease that two of Dawning PR Founder Kendra Riley’s three children have/had.

Just weeks before adding this fatal disease – that now has a curative gene therapy treatment here in the U.S. that is also FDA approved (the same one Kendra’s youngest daughter Keira received in Italy) – to the Recommended Uniform Screening Panel (RUSP) that each state uses as guidelines for newborn screening, the Committee was shuttered. The vote was dropped. Decades of work have now become useless. And worst of all – the lives of future children born with MLD in the United States will now lead them down a path similar to Kendra’s other daughter Livvy, who was symptomatic and therefore not eligible for this life-saving treatment and is now in hospice at age 6.

Determined to move the “vote” forward and make their voices heard, the Rileys and other MLD families across the nation went to Capitol Hill to show lawmakers what newborn screening for MLD can do; to show them, in person, the lives that have already been saved.

Kendra took her youngest daughter Keira (who received this treatment in Italy before it had become available in the U.S., and approved by the FDA) and her oldest daughter Eva. They showed pictures to lawmakers of Kendra and Dave’s other daughter Livvy – who stayed home with Dad while in hospice, unable to walk, talk and on 10 medications a day to stay pain free – so they could see the contrast between what newborn screening can do, and what it would do without it.

They met with Rep. Greg Stanton, along with staffers from the offices of Senator Mark Kelly, Senator Ruben Gallego and Rep. Buddy Carter from Georgia.

Kendra also spoke alongside three other families at a Congressional Briefing at the Capitol Hill Visitor Center, where a variety of lawmakers listened in to their personal stories of tragedy and how they have the power to turn this into a triumph for the many families who will also be faced with this devastating diagnosis.

They are hopeful their words were heard, that their stories were passed along to Secretary Robert F. Kennedy Jr. and President Donald Trump. That change WILL happen.

The fight is not over, though, and the Riley family along with the rest of the MLD community will continue advocating to help others avoid the outcomes of MLD without newborn screening.

For more information on the Riley family’s efforts alongside that of the entire MLD community, visit their family blog at RileysRoad.com. For more information on MLD and the advocacy taking place, or to make a donation to support their efforts, visit the MLD Foundation.