We recently found out that my son Kevin has been officially diagnosed with early onset alzheimers. He is now the 4th generation to get it, but it hits earlier than ever. He is 41 yrs old. I would appreciate it if anyone visits his page at gofundme.com and search for kevin's early onset alzheimers, zip 33870. We are hoping to send him for lots of clinical trials, and for more living research while he still is young and not in stage 7.....Thanks
Yes it is. I still research a lot, and cannot find any hope anywhere...My only dream is that he can contribute something for research, and make a breakthrough for future victims. It saddens me that not much new treatments have been found in the past 5 years, and that neurologists still cannot properly diagnose it. We are hoping to go to the mayo clinic and the byrd institute for clinical trials, but so far, none of the trials look promising. It seems like every disease is making progress, and cures are being found, but alzheimers remains stagnant, and nothing seems to help. I wish I were more optimistic.
Phranque, this is sad news. I tried to visit Kevin's page at gofund.com but couldn't find it. I'll try again. (Computers still continue to baffle me.) Is Johns Hopkins doing anything? I know they publish a lot about Alzheimer's. My Irish mother used to say, "We live in hope and die in despair." Words seem so empty, but I will keep you and Kevin in my prayers.
When I was looking up Johns Hopkins' Peter Rabins M.D M.H.S., Assoc. Investigator, who has written a lot about Alzheimer's, I came across this: If you have a general question regarding the Alzheimer's Disease Research Center, please contact Elaine Delman. She will either be able to answer your question or direct you to the appropriate person.
Elaine Delman The Johns Hopkins University Department of Pathology 720 Rutland Avenue Baltimore, MD, 21205 edelman1@jhmi.edu (410) 502-5164 (410) 955-9777
I also could not find Kevin's page at gofundme.com. I looked at over 200 listings in the MEDICAL category.
That "gofundme" is a great site to publicize a worthy cause. I never knew it existed, But they need to have a search tool so visitors can find what they're looking for.
George, if you'll enter the 33870 zip code Phranque provided in the search box (not too obvious -- it's just to the right of the magnifying glass icon) you'll be taken right to Kevin's page.
Phranque, I am so very sorry another generation (and YOU) have to live this nightmare. Thoughts and prayers are with you and Kevin. As you know both Marilyn Blum (marilyninmd) and Emily Gillespie Clement (can't remember her sign in name) both live in Maryland and had their husband's treated at Johns Hopkins so they might have some first hand experience to share with you.
Is your so in the midwest too? Mayo, Cleveland clinic, I know you know them all Phranque just trying to help when I feel so helpless....
Thank you all for your encouraging words and thoughts. My son fortunately is single, with no children, and he is adamant about joining rresearch to be used as a guinea pig for trials in the hopes that he may help find a cure or treatment that will work. For those having problems with the gofund me page, go to gofundme.com and search for kevin's early onset alzheimers, or zip 33870 and you should find it. If not, contact me and I can email you the link. Thanks to all who are supportintg us in this crusade.
I'd rather send a donation directly to you. (I don't want all the followup email that I've had in the past when I've donated to similar organizations.)
There are just no words...but my thoughts and prayers are with you and your family. As Mary said above, please send me your U.S.P.S. mailing address, for the same reasons.
Just editing to say to Frank and Mary that I got the Florida address. Thanks for forwarding it Mary.
Thanks Wolf...I remember all our long conversations, and still read your posts. But now, all the pain has returned and we are desperate to find research facilities that want a live guinea pig. Fortunately he is single, no children, and free to travel. He also is in early stage 1-2, so he can still communicate properly, and provide feedback. But this is bringing back so many hard sad memories, and we are coping better than last time. Thanks for your words of encouragement. Marsh- Thank you for your kind thoughts. Vickie- Thanks for your prayers and thoughts.... Sweet Nora...none of us are handling this too well.....but at least we are experienced..... Charlotte....we are buying a kangaroo and moving to australia Georgestrait...gofundme.com and search for 33870 LFL- we are in central florida.... mary75-thank you for the thoughts and prayers Mim- thanks for the kind words gourdchipper- thanks..nice to hear from you elizabeth- thank you for your prayers and thoughts. It is not easier this time around, but we are better prepared, and have experience. We are determined to make some significant advances in the research, and Kevin knows he just got a death sentence, but he will do all he can to extend that. Thanks to all of you for your support.
Phranque, I am so very sad to read about your son. My heart just breaks that this is happening. Please know that you and Kevin are in my prayers. (((Hugs)))
Pharanque seems so long ago that we were having breakfast in LaBelle and talking about the challenges with our wives and now your facing it again with your son,my heart breaks when I read of new cases,I guess thats why I don't come here to chat anymore,my prayers are with you both
Old Don- how well I remember our breakfast in Labelle.....remember we had to bungee cord my front bumper to the jaguar so I could drive home??? Anyway, thank you for your prayers....we need them.
Phranque, I am so sad you son has AD. I have mentioned before on this site that DH's EOAD is familial. I am so afraid our daughter has inherited the mutation also. So my heart really aches for your entire family. Our daughter and many of DH's blood relatives are enrolled in the DIAN TU study. This study involves those who are at risk of inheriting certain mutations for autosomal dominant AD. There are a number of locations that are involved in the trials. While the researchers may not be studying the particular variation of AD your son has, they may be able to direct him to some clinical trials. I pasted the link below.