Each year on the very last day of February, Jeff Leider makes a detour on his Hunter syndrome (mucopolysaccharide II) journey to travel from his home state of New Jersey to Washington D.C.
As the Saddle Brook Daily Voice reported earlier this year, for the last couple of years, Jeff has been advocating for kids suffering from rare diseases such as Hunter syndrome.
He states that he does this so kids will have a chance. The National Association for Rare Disorders states that are about 7,000 rare disease as well as disorders. These affect 30 million people in the United States. Half of those affected are children.
Jeff has two sons, Jason and Justin, who are both fighting Hunter Syndrome.
The boys are currently taking part in a medical trial where both of them get enzymes that help them live. Both of them are doing fine but the FDA must approve the treatment.
Jeff states that some children diagnosed with diseases designated as “rare” because the number of people identified with the disease is small, may not live past the age of 10. Frantic parents can’t wait for lengthy treatment approval processes. That’s why Jeff takes it upon himself every year to speak to the Congressional Rare Disease Caucus about speeding up clinical trials.
There needs to be a way to make accessing treatments easier. Jeff considers himself fortunate that his sons are in a clinical trial but some people are still waiting to be treated. If his 10-year-old son Jason were not in the trial, he would most likely be in a wheelchair and need assistance with breathing.
Jeff is fighting for those who cannot or do not have a voice.
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