Rise Up for Dustin
Organized by: Dustin & Rachel's Friends
Our friend Dustin has ALS.
His partner, Rachel, has been writing about their experiences at de-generationdocument.tumblr.com.
Dustin's illness brings some very immediate needs. If you want to help their family in some way, giving money here is a great place to start. There are two practical, immediate needs that they have – things that will make their lives much easier.
When you give money here, it goes directly to Dustin and Rachel. They can put it to use immediately.
You’ll be helping them with two big issues:
Dustin and Rachel need to combine a walk-in closet and existing bathroom in order to build a fully accessible bathroom with a zero-grade shower for Dustin. It’s a big project. The contractor is ready. Let’s help them knock it out.
Home health aide
They’ve found an awesome person, Amie, who can help Dustin with everything from stretching to bathing to eating. She may be able to help get him to and from physical therapy as well. In short, she’s a huge help not only to Dustin, but to Rachel as well. Let's make sure they can keep Amie in their lives.
AND WHAT TO DO NEXT:
After we tackle these immediate needs, please consider targeting larger structural issues.
How can progress toward therapies and cures happen if the National Institutes for Health budget keeps getting slashed? Why won't insurance pay for physical therapy at home for Dustin-- and others in his situation? How can we move from taking care of this single family to making change on a more massive scale-- which is what Dustin and Rachel really want?
Second, meet with your local Congressperson when they have district days in order to talk to them about the importance of funding the NIH and of changing how insurers approach care for the terminally ill. Need to know who to contact? Click here.
Here is a good article on the need for citizen pressure on congress to fund science research.
The take-away: “According to Dr. Francis Collins, the director of the National Institutes of Health, his agency has lost 25 percent of its purchasing power over the last decade due to draconian federal budget cuts coupled with inflation. Why does this affect ALS? Because according to the ALS Association, the NIH is the single largest source of ALS research funding in the world. But in 2014, the NIH has seen their funding slashed 5.1 percent, and their total budget is now $30.15 billion, down from $31.2 billion in 2010.”
2. The ALS Therapy Development Institute is a nonprofit biotechnology organization dedicated to developing effective treatments for ALS. This largely Boston-based research effort is known for taking a non-traditional approach to developing treatments.
3. The ALS Association is the group getting most of the money from the ice-bucket challenge. It is largely focused on patient support. It’s the best-known of the organizations striving to treat and cure ALS through global research and nationwide advocacy while also empowering people with the disease, and their families, to live fuller lives by providing them with compassionate care and support.
4. The Packard Center for ALS Research at Johns Hopkins enables the world’s best ALS scientists to collaborate and access funding so that they may continue work to rapidly develop new treatments and find a cure for the disease. This is a research centered organization rather than a patient-support focused group.
5. International project to map the DNA profiles of 15,000 ALS patients in order to reach an understanding of the genetic factor(s) involved in the disease.