A Quick Email or Phone Call Could Help Save Rome Boy’s Life
Spencer Smith, the two-year old grandson of Kirk and Linda Hinman, was just diagnosed with a rare, incurable, progressive disease called MPS-III, or Sanfilippo Syndrome. The good news is, you have the power to help this little guy.
Spencer is one of the sweetest 2 yr-old's you'd ever meet. He's happy, good-natured, and loves playing in the pool with his daddy. He enjoys dancing in the yard with his mommy too. We'd like to keep Spencer smiling, but if left untreated, his condition will worsen, and will eventually lead to paralysis and his organs will shut down.
When the doctor notified Spencer's grandparents that there is currently no cure for this disease, it struck a nerve with them. There's no cure because politicians currently will not support funding on rare diseases.
However, you can help by urging our elected representatives in the US Senate to pass the 21st Century Cures Act to fund research cures for rare diseases. The 21st Century Cures Act has already been passed by half of the House of Representatives, but the act is now in the hands of the Senate.
You can help in this effort by simply sending an email to Senator Kirsten Gillibrand: firstname.lastname@example.org and to Senator Charles Schumer: Go to his website, https://www.schumer.senate.gov/contact/email-chuck and click on the option to share your opinion or comments on bills or other issues.
You can call them too: Senator Schumer: 202-224-6542 or Senator Gillibrand: 202-224-4451. Call them during the day when a member of the staff will be there to answer the phone. This is urgent because Congress will recess soon.