My Letter to Congress: H.R.3059 Creating Hope Act of 2011 
Contact Congress
This letter was sent by OpenCongress user
stalow
on
November 04, 2011
in support of
H.R.3059 Creating Hope Act of 2011.
Privacy setting:
PUBLIC
To:
-
Sen. Frank Lautenberg [D, NJ] Vote on Passage of H.R.3059: Not Voted Yet -
Sen. Robert Menéndez [D, NJ] Vote on Passage of H.R.3059: Not Voted Yet -
Rep. Scott Garrett [R, NJ-5] Vote on Passage of H.R.3059: Not Voted Yet
H.R.3059 Creating Hope Act of 2011
I am writing as your constituent in the 5th Congressional district of New Jersey. I support H.R.3059 - Creating Hope Act of 2011, and am tracking it using OpenCongress.org, the free public resource website for government transparency and accountability.
I am the mother of, Jacob, a 7-year old boy with a very rare and extremely aggressive brain tumor. This all began on the morning of July 12, 2011 when Jacob had a seizure and we rushed him to the hospital. Ten days later he was diagnosed and five days after that we received the pathology and the news that his type of cancer is "incurable" and they only expect him to live another year at the most. You can only imagine the anguish we felt upon hearing this news. "Incurable" is not acceptable. Something has to be done to increase awareness and push the development of treatments for these rare diseases that affect children and everyone around them. For the last four months we have been caught up in a whirlwind, from not knowing what was wrong, to surgery, to diagnosis, to treatment. He endured oral chemotherapy and then 7 weeks of radiation, 5 days a week. He will begin IV chemotherapy on 12/1. This is all in an effort to improve and extend his life, not save it. My happy, energetic little boy is having to bear these treatments, in hopes of a miracle, because there is... no cure.
I see no reason how anyone could not or why anyone would not support this bill. Parents, like me, need hope that everything possible is being done to help our children. We need something to hold on to, something to look toward, in hopes that a treatment will be found that will cure them.
Thank you for taking the time to read our story. There are thousands more just like it. We need your support.
Sincerely,
Stacey Lowmaster
I am the mother of, Jacob, a 7-year old boy with a very rare and extremely aggressive brain tumor. This all began on the morning of July 12, 2011 when Jacob had a seizure and we rushed him to the hospital. Ten days later he was diagnosed and five days after that we received the pathology and the news that his type of cancer is "incurable" and they only expect him to live another year at the most. You can only imagine the anguish we felt upon hearing this news. "Incurable" is not acceptable. Something has to be done to increase awareness and push the development of treatments for these rare diseases that affect children and everyone around them. For the last four months we have been caught up in a whirlwind, from not knowing what was wrong, to surgery, to diagnosis, to treatment. He endured oral chemotherapy and then 7 weeks of radiation, 5 days a week. He will begin IV chemotherapy on 12/1. This is all in an effort to improve and extend his life, not save it. My happy, energetic little boy is having to bear these treatments, in hopes of a miracle, because there is... no cure.
I see no reason how anyone could not or why anyone would not support this bill. Parents, like me, need hope that everything possible is being done to help our children. We need something to hold on to, something to look toward, in hopes that a treatment will be found that will cure them.
Thank you for taking the time to read our story. There are thousands more just like it. We need your support.
Sincerely,
Stacey Lowmaster
This letter was a reply from the office of Sen. Robert Menéndez [D, NJ] on November 04, 2011.
Senator Menendez Message Confirmation
Dear Friend,
Thank you for taking the time to contact me. Your comments are very
important to me, and I wanted to confirm with you that I have received
your message. All communications I receive are registered and sorted by
my office, and I will try to respond to you as quickly as possible.
If you have contacted me about an individual issue that you are having
with a federal or state agency that requires immediate assistance please
contact my Newark, NJ office directly at 973-645-3030.
Sincerely,
Senator Robert Menendez
Please do not reply to this e-mail as this address is not monitored. To
contact my office, please use the contact form found on my website at
http://menendez.senate.gov/contact/
Thank you for taking the time to contact me. Your comments are very
important to me, and I wanted to confirm with you that I have received
your message. All communications I receive are registered and sorted by
my office, and I will try to respond to you as quickly as possible.
If you have contacted me about an individual issue that you are having
with a federal or state agency that requires immediate assistance please
contact my Newark, NJ office directly at 973-645-3030.
Sincerely,
Senator Robert Menendez
Please do not reply to this e-mail as this address is not monitored. To
contact my office, please use the contact form found on my website at
http://menendez.senate.gov/contact/
This letter was a reply from the office of Sen. Robert Menéndez [D, NJ] on November 09, 2011.
Response from Senator Menendez
nendez.senate.gov>
Dear Ms. Lowmaster:
Thank you for contacting me to express your support of the Creating Hope
Act. Your opinion is very important to me, and I appreciate the
opportunity to respond to you.
As you know, the Creating Hope Act would amend the Food, Drug, and
Cosmetic (FDC) Act to change the Priority Review Voucher Program and
extend it to applications for rare pediatric diseases. Like you, I
understand the dire need to promote the development of new drugs for
children who suffer from serious and rare medical conditions. Rest
assured that I will keep your views in mind as Congress moves forward.
Again, thank you for sharing your thoughts with me. Please do not
hesitate to contact me if I can be of further assistance. I invite you
to visit my website (http://menendez.senate.gov
nendez.senate.gov> ) to learn more about how I am standing up for New
Jersey families in the United States Senate.
For the latest news from Senator Menendez visit the following sites:
nendez.senate.gov%2f>
w.youtube.com%2fuser%2fSenatorMenendezNJ>
w.facebook.com%2fsenatormenendez>
itter.com%2fSenatorMenendez>
Please do not reply to this e-mail as this address is not monitored. To
contact my office, please use the contact form found on my website at
http://menendez.senate.gov/contact/
nendez.senate.gov%2fcontact%2f>
Note to Congressional staff & elected officials reading this: this letter was sent through Contact-Congress features on OpenCongress.org, a free public resource website, but in the future we seek to compel the U.S. Congress to adopt fully open technology for constituent communications. For more information how your office can better handle public feedback through an open API and open standards, contact us -- even today, there are significantly more efficient and responsive ways for our elected officials to receive email feedback than the status quo of individual webforms. For greater public accountability in government, we must make the process of writing one's members of Congress more accessible and empowering. Looking ahead, we will release more data from Contact-Congress letters and Congressional response rates back into the public commons. This will result in a new open data source on bills & issues people care about, as well as encourage best practices in constituent communications and make it possible to grade members of Congress on their responsiveness & citizen satisfaction.
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