Everyone has been so very kind to us, but you always ask "What can you do to help?" There are a few
main ways that you can help:
You can make a immediate impact by following the steps listed in the Targeting Potential Donors.
We need help identifying potential donors, networking to develop relationships with these donors, and
contacting these donors to get them to evaluate our cause. Any one and everyone can help use with this
task. At a minimum just send letters out to potential donors.
Other ways to help are outlined in the downloadable one page "You
Can Help" document.
Please include all of us in your prayers. Pray for Nathan and P.J., Pray for a Miracle, Pray for
Nathan's eyes to get better, Pray to help Nathan understand, Pray for Tricia and myself to give us
strength to deal with this devastation, Pray for Nicholas to understand and be strong for his brothers.
Prayer is powerful.
Help raise funds. See Targeting Potential Donors. We are closing in on a
therapy. A formal project is in process to initiate a clinical trial for CLN2. Unfortunately funding is
the largest obstacles we face. $2 million is what is needed to get the necessary pre-clinical data and
organize a clinical trial for a gene therapy for Nathan's and P.J.'s disease. Phil developed a business
plan that outlines some of these expense and presented this plan to leading biotech companies. The
Cornell project team's detailed work plan also confirms that at least $2 million will be needed to
develop this therapy. The project will stop if we can not raise the necessary funding. We only have
enough funding to keep the project moving forward for a few more months. We need to target
philanthropic individuals and foundations to help us fund this life saving therapy. These types of
individuals can make a difference in many children's lives. If you know of anyone please contact them
or let us know who they are and we will contact them. It is unbearable to think that money is what
stands in the way of saving Nathan's and P.J.'s life (see Clinical
Trial Efforts and Fund Raising Committee).
Help us research possibilities. We have spent numerous hours researching possibilities trying to go at
every angle, but we are just two people. If more people help us research, maybe someone will uncover
something that may help. It always helps to have another person's perspective on everything (e.g.,
possible approaches: ophthalmologic, neurological, Batten's research, alternative approaches, maybe
raise money and awareness...) The current leading methods of treatment are Gene Transfer Therapy, Small
Molecule Pharmaceuticals, Enzyme replacement, and Stem Cell therapy. Research in these fields has been
used on other diseases, hopefully we can apply this science to Batten disease. So if you know anyone
involved in these fields forward Nathan's story to them and their name to me.
Help raise awareness. If we get more exposure on Nathan's Battle story/condition there is greater
likelihood that there will be more governmental spending and more researchers/companies interested in
finding a cure. We could start a letter writing campaign (philanthropist, Letter to Senator Lugar,
sample letter) to start generating greater awareness and research funds(Nationally on TV, Magazines,
Newspapers...). These letters could also get celebrities involved to help the cause. Letters to
government (Senators or Congress) would also help increase spending on rare diseases specifically CLN2.
Help us make Nathan and P.J. happy. As long as they are happy, then we should not have anything to be sad about.
This is one of our main goals for them and is defiantly something that each of us can immediately affect.
To get involved and help save Nathan and P.J.. Please participate on one of our organized committees. We have a
Fund Raising Committee and an Awareness Committee. These committees always need help. Please contact
Fund Raising: DHSedgwick@aol.com
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