Re: /hope/fundraising

[Guest guest]

Dear ,I don't think any of us can be here and not have down days. This is after all a serious disease.Still, I find I am totally optimistic right now. Even I am amazed that I can feel this way after almost losing my son twice in 2005.I am optimistic because so much has changed in the last two years. Patients with PSC are now able to share what works and what doesn't through this forum and through our conferences. This alone should help patients live healthier lives and go longer before a transplant is needed. I feel this way because I think time will show that the high dose urso does make a difference and that the DHA in the fish oil could also help to delay progression of the disease.I feel this way because if not for our conference and this group my son would not be on a high dose Urso or the fish oil. His personal physician considered half the urso dose he is on now to be a high dose.  Since patients and caregivers are sharing what is working I think we will eventually see patients going longer before needing a transplant. With research and time there will be new ideas to try and we can chase what works and discard what doesn't because now we have the internal communication in our group to share this information. There is so much in the works right now. Dave is meeting with the foundation this week and we are ready to offer our own first research grant.Other autoimmune diseases are also making progress and getting closer to understanding how autoimmune diseases work. This will help us also. Still more good will come as a further understanding of genetics and stem cell research progress. I feel that right now, I need to do whatever I can with the information I have available to help my son stay as stable as possible as advances are made. Don't be discouraged by the fundraising, we need to keep at it. We are doing great. When Dave gets back maybe he can give you some guidelines on grant writing and we can try again.In the meantime folks, if you or anyone you know would use a Kroger card to help us raise money, please contact me. This program is free and easy and has brought us a couple of thousand dollars in just under a year. Keep using our AAA ink cartridge recycle program as this is also steady income to the foundation.Join us next spring for our annual fundraiser so that we can support yet another grant. Please stay hopeful and proactive. We can make a difference in the future treatment of PSC. Take care,LeeI think we need to get back on to the fundraising bandwagon.  I was supposed to do the corporate fundraising thing and frankly have been quite depressed about the success or lack there of the whole thing.  We need to get some grants written and I am up for the task.  I am feeling the energy!  Just give me the green light!Blessings,