April marked the Second Annual International LDN conference held at the Lister Hill Center Auditorium , National Library of Medicine at the National Institute of Health in Bethesda,Maryland. There is something magical about being in those hallowed halls. I told Skip it was like being at the Mother-ship. Speakers and attendee’s came from all over the US and Europe. Adam videotaped the whole day plus we got some very cool interviews. We’ll be editing away for all to see. We were very involved in the planning of this conference. Dr Skip was invited to speak. Skip’s Pharmacy paid for the manuals to be printed. Adam designed the cover. Adam videotaped the whole thing and created small clips for the wen site at www.lowdosenaltrexone.org.
Susan Sedlock, a wonderful woman who had volunteered to chair the event led us off. Dr David Gluck welcomed us to the conference and discussed the year in LDN. The keynote speaker was Dr Jill Smith, professor of Gastroenterology at the Hershey Medical Center at Penn State University. She spoke about her research with LDN and Crohns disease. The next was Dr Jacquelyn McCandless, a board certified specialist in Psychiatry and Neurology. She spoke about her research into autism and her work with LDN. Next, we heard from the advocacy panel. The first, Ann Brasher , spoke about her Crohns disease and her use of LDN, Joel Gluck read for Brenda who couldn’t make it. William Way, a person with HIV for the last sixteen years, spoke about his progress. Susan Sedlock spoke about her father who had multiple myeloma . She takes LDN for her chronic fatigue syndrome. Mary Ann Bradley , author of “Up a Creek with a Paddle” spoke about her husband Noel and how he is doing on LDN. The next speaker was Dr Phil Boyle who came all the way from Ireland. He is Mary Ann’s brother. He is a GP in Ireland who does fertility work and has been using LDN for some of his patients and he presented his data.
The next speaker was our own Dr Skip Lenz. He spoke about fillers (which ones to use) and also side effects of LDN. Iâ€™ll let him write his own article. The last person was Dr Crowley, also from Ireland , who brought over a documentary made by an Irish filmmaker, Connor Slatery, about LDN.
One thing I felt about the conference is that it was a long to way to travel for someone with MS. It was a wonderful day for LDN. It was suggested that we do a regional meeting and I think we can do that down the line but I think its important not have have to wait so long for good information. What made me happy about the conference were the amount of medical people there looking for information. That made my heart sing. I asked Dr Skip if we could have a online forum to start. When we redid our web page Adam created this possibility. We will take it from here. What i want is suggestions about subject matter– I can sit here and plan what I think you want but why not have what you want. so throw it out there to me.
What we would love in the future is an all day conference that we can video conference so you guys can just sign on to your computer. and even in that case I would want to know what subjects you all want covered. Nothing more horrible then having a conference and not getting the info you want.
Good things are in the air. Most importantly this is about you guys, not about us, so thats how we need to proceed.
We will have a DVD available shortly that you can order. What we are hoping is that we can use this tool to raise awareness of LDN in the community and have something that is real and tangible to show physicians that are considering LDN for their patients.
After we complete the DVD , Adam and I will be working on a documentary. We need some volunteers to interview and to film themselves. If you are far away and have access to a video camera and would like to participate that would be great. We would like it in DV format but if you can’t do that any video format will be great and we’ll just transfer it to DV. We would really like to be able to show what life is like for an MS patient. We do not want this to be an informercial for LDN but an honest discussion. This would also include people who are not taking LDN that may be doing other drugs, no drugs or are having difficulty deciding how to manage their MS. Lastly if you know any physicians that would like to talk about the off label use of an already approved medicine on either side. I welcome all opinions because I think thats the best way to even start a discussion. Familiy member that have something to say are also welcome. I wish I could travel the world interviewing you all. If you live in south florida you can contact me and I’ll get Adam over there. more on all of these projects later.
What I think is so important is that people see who you guys are and what your issues and how you deal with them indvidually and and as a group.
Most important I think its important to have a discussion and see where it goes. My objective is not to talk people into taking LDN but to educate them about what we know so far but more importantly and I know I’m repeating myself
I can be reached at Cyndi@skipspharmacy.com
I am really very proud of our Dr Skip. He made a commitment to all our MS patients to give you the best advice and prices. I am looking forward to seeing what he has in store for next year as well as the other speakers.
We have ordered copies of Mary Boyle Bradleyâ€™s Book ” Up the Creek with a Paddle: Beat MS and Many Autoimmune Disorders with Low Dose Naltrexone (LDN). “It is a wonderfully written story of Mary Anne “s journey with her husband Noel his MS and discovering LDN. Mary Anne has been an advocate , and has spoken at both LDN conferences. Her book is very heartfelt and inspiring not just for folks with MS but I think for anyone who is involved or has a person in their life with a chronic disease.
more about that later.