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Help Nathan & PJ
Now by Targeting
Potential Donors
Other Ways to Help
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 them directly.

Fund Raising: DHSedgwick@aol.com

Awareness: NathansAuntRose@aol.com

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