Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript  08-19-2006

Topic:  Open Forum - Patrick Griffin Passing

Host: Bruce Gaughran


Chat Participants:




TerryW: Hello all

Bruce: Morning, Terry  How was the trip?

TerryW: It was good

Bruce: Are you feeling any better?

TerryW: Glad to be home

MICH: Good Morning Terry ... is your weather in the 90's too?

TerryW: yes

Bruce: Yes to 90's or yes to feeling better?

Bruce: Rick, did you know Patrick Griffin?

MICH: I will forever be grateful to both of you... Terry for helping me deal with Social Security in getting on disability and Bruce for helping me know the procedures to get a letter to postpone getting Social Security Insurance.

TerryW: It's sad.  I get upset anytime anyone with KD passes away

Bruce: We are happy we can help.  We all need a helping hand occasionally.

Bruce: I thought Susanne and you wrote a nice email.

TerryW: Yo are welcom e

TerryW: you

TerryW: Thanks Bruce

Bruce: I was in shock when I read the first email from his friend.  I just couldn't believe it.

MikeG entered the room.

MICH: Sorry to hear about Patricia... how old was she, where was she from and what was her call sign?

Bruce: Morning Mike

Bruce: How are you today?

TerryW: I was in shock when I called on the way home yesterday to retreive my phone messages

MikeG: morning - I'm doing ok

TerryW: Patrick was 56

TerryW: hi mike

Bruce: Okay just sounds okay ... anything going on you want to talk about?

MikeG: hey  terry

Bruce: 56 years young in my book ...

MikeG: sorry to hear about Patrick

Bruce: Terry, I don't know what was the cause of death.  Do you know?

Bruce: Yes, Mike, before I even know about the KDA I was in contact with Patrick.  He was quite a resource for me and eventually turned me on to the KDA.

TerryW: Yes, he fell

TerryW: He was found by a neighbor

TerryW: He was still alive but was in a semi comatose state.

MikeG: I used his site before KDA was even formed

Bruce: Oh, wow!  That must have been terrible.  He always commented about the problems of living alone.

TerryW: He had liver failure and an obstructed intestine

MikeG: that's exactly what happened to John Mengel

Bruce: WOW!

TerryW: they tried hard to fix him back up

TerryW: he was in hospital for a  week

MikeG: he fell and hit his head - everything went down hill from there

Bruce: Rick, Patrick Griffin passed away yesterday.  He was one of the co-founders of the KDA and a friend to many of us.

TerryW: He was able to respond somewhat with his hands to his relatives when they talked to him

MICH: How old was John Mengel when he passed away?

Bruce: My brother, Gus, fell and broke his leg in several places and never really recovered fully after the surgury.

MikeG: John was almost 70

Bruce: Falls are tough on us.

MikeG: sure are!!!

Bruce: Since my two bad falls last year, I have been extra extra cautious.  I can't afford another.

MikeG: John lived about a month after the fall but he was so weak he couldn't do anything anymore.

TerryW: I will be back in a bit

MikeG: We tried to convince John to get a CAT scan of his head since that was what he hit when he fell.  We think it must have caused a concussion or something.

Bruce: When I fell in PA and cracked my head on the garage floor it seemed to take forever to recover.  I had bleeding on the brain and lost my sense of smell (of which only a portion of it came back).  Any loud noises were terribly irritating to me.

MikeG: WOW

MikeG: did you fall backwards?

Bruce: Yes, from the third step in the garage.  The knees just buckled and I went down.

MikeG: yep - that's the very worst way to fall

Bruce: I was out for a few minutes and when the ambulance arrived they took me in for scans and obervation.

MikeG: I broke my fibula when my knees buckled last year about this time.

Bruce: If Cindy hadn't have been there I might have ended up like Patrick.  It must have been hell for him.

MikeG: I'm sure!

MikeG: I have a hard enough time getting up when I volunteerly go down...

Bruce: Situations like this (Patrick's passing) are always reality checks for me.

MICH: I concurr with all the garage and cement falls... I always have a cell phone with me.

Bruce: Low turn-out today for the chat.

MikeG: yes, very hard to take.

MikeG: That's a good idea.

Bruce: I know how close you were to John and his wife.

Bruce: Since I am a few years older than Patrick, it really makes you think.

fl-don entered the room.

Bruce: Morning, Don

MikeG: Yes, John was a great person with many friends here in this community AND KDA.

fl-don: hi all

MikeG: howdy Don

Bruce: We were just talking about Patrick Griffin.  Did you know him?

fl-don: what happened 2 pat g?

Bruce: He passed away two days ago.

fl-don: omg wasn't he young?

Bruce: 56 years young

TerryW: His funeral is today - his family asked that we send donations to the KDA rather than flowers.  We offered for the KDA to send flowers and they asked us not to.

Bruce: He fell in his house

fl-don: wow, how?

fl-don: did he die from the fall?

Bruce: I saw the notice in the paper and it really hit me.  I was impressed that his friend and his brother both took the time to contact us.

Bruce: We don't know how long he was laying there, but Terry was told he passed away a week later from complications.

Bruce: Well, we are honoring him today with our thoughts and prayers.

fl-don: good idea

fl-don: with terry & susanne, pat started the kda web site

Bruce: For Rick and Don, we received our first Letter of Intent for our KDA research grant yesterday.  We hope to be able to fund two of them this fall for $50,000 thanks to everyone's generous donations this year.

Bruce: Terry, I will respond to the researcher from Australia asking about the funding of a grant 'down-under'.

fl-don: good.  research is needed to help the children

MICH: Wow, $50,000!

TerryW: Thanks Bruce

fl-don: u can tell us about it at the convention

Bruce: Yes, our associates and their friends have been very generous this year and we are excited to be able to help our researcher friends.

Bruce: Are you coming, Don?

MICH: Terry, how did you and Patrick meet, was he from California too?

fl-don: mike and i r coming without the wives.  remember, what happens in atlanta, stays in atlanta!!!!!!!!!!!!!!

Bruce: Great!  I look forward to seeing you.  MUMS THE WORD!!!!

TerryW: We met at another conference for SMA

TerryW: Spina Muscular Atrophy

Bruce: But, I will bring my camera!!!!

fl-don: leave camera home.  bring blonds!!!!!!!!!!!!!!!!!!!!!!!

fl-don: single blonds

Bruce: I don't have enough money.

Bruce: This last month we were informed that two new researchers at Michigan State University are beginning the study of KD.  That is more good news.

MikeG: That IS good news, Bruce!

fl-don: i head to bethesda nih in sept

MICH: Wow... I went to MSU.... Quest had an article on a grad in their Voc Rehab department... but didn't realize they are exploring the medical field too!

fl-don: i went to emu in ypsilanti

Bruce: Also, one of our associates has made a donation to fund the travel exprenses for two young researchers or PhD students to attend our conference.  This was very nice and well received in the research community.

Bruce: Good luck on the trip, Don.

MICH: Don... my Mom taught at EMU and I went to the lab  school there, Roosevelt!

Bruce: Where is Ypsilanti in Michigan?

fl-don: i plan to get drunk the day they they cure this disease

MICH: Ypsi is close the U of M in Ann Arbor

Bruce: I think several of us might celebrate on that day.

fl-don: i remember the lab school in the middle of the campus

Bruce: It always amazes me how small this world is.  Six degrees of separation?

fl-don: what was your mom's name?

MICH: Bruce... it's the law of random sameness

fl-don: mike and i live 2 miles from each other.  we meet often

fl-don: we discuss commpn problems, our wives

MICH: Jane Lockwood... it was when she was in the education dept working on her PHD at the U of M

Bruce: And, they get together and discuss their never ending problem ...

fl-don: oic, i wuz in the business collegew

fl-don: learned to spell there

MICH: Don... my Dad got his MBA at the U of M

fl-don: both good women, but don't tell the wives we said so

fl-don: go blue!

MICH: Don, my wifes boss who brought her to Utah got his business degree at EMU

Bruce: Well, I am excited college football is almost here.  It has been a long off-season.

fl-don: graduated in 71

fl-don: going to the tampa bay buccaneers game tonight

Bruce: I just saw the college AP rankings.  They put Florida as #7 I believe and Texas as #3 with Ohio State at #1.

fl-don: mich #21 i hear

Bruce: Who is your quarterback this year?

MICH: Don, I was in 8th or 9th grade at Roosevelt in about 1961

fl-don: just after the guy killed the girl in het bacement down the street

fl-don: qb at bucs is simms

Bruce: That sounds like a 'who done it', Don.

fl-don: the guy is still in prison

fl-don: gary collins i think

fl-don: shudda fried him

Bruce: Where they college students?

fl-don: yup

Bruce: Were

Gopher entered the room.

Bruce: Morning

fl-don: karen sue bineman i think

Gopher: Lost track of the time again...Good morning

Bruce: How is the weather in Minnesota today?

Gopher: Cool and Cloudy

fl-don: how is nih study going?

Bruce: Better than what you had several weeks ago, I bet

Gopher: Yes!! It was really hot!

TerryW: This is Susanne - Terry had to step a way for a moment.  I just sent the announcement to all the KD emailing lists regarding Patrick.  We will also post it to the Web Site on a memorial page.

Bruce: People continue to go through (two per week I believe).  The study will continue for 2½ years because the last initial participants don't start until November.

fl-don: hi susanne, how u been?

Bruce: Thanks, Susanne.  It was well written.

Bruce: He had many friends out there.

TerryW: He would always say, and I think we should be reminded, "Don't let your attitude determine your alti"Your attitude determines your altitude."

TerryW: Thank you - it was written from the heart.  Patrick was a really bright individual and I know it was tough on him to live alone.

fl-don: i remember pat from the chicago conferences

Bruce: Yes, many times when Patrick and I would communicate he would mention living along and what it meant to his life.

TerryW: I've been fine, just so super busy.   I thought we were moving here to have MORE time, not less... but having the larger place to take care of and a more demanding job than I had before has proven quite challenging... then sprinkle in 2 horses and multiple adopted feral cats, an actual social life and I'm spent!

TerryW: Ooops, I messed that paste up!

TerryW: "Your attitude determines your altitude."

Bruce: Gopher, we lost a friend this week with KD.  We have been chatting about him most of the morning.  He was one of the co-founders of the KDA and a resource to many of us.  His name was Patrick Griffin.

Gopher: What a great saying!

fl-don: judy pretty much keeps our household up by herself.  never complains.

fl-don: we sometrimes forget this disease also affects the lives of our spouses

TerryW: We'd call him every now and then to just see what was up.  He struggled for a while, they had him on so many different medications for pain, diabetes, etc...  but he was really getting things together this past year, got a good chair to run around in, etc.  He was sounding pretty happy and getting ready to move closer to his family.

Bruce: What would we do without our spouses and loved ones

Gopher: Perhaps for those of us who have the advantage of the Kennedy Disease would be nice know more about its history. We are so appreciative!! Roger would not be as good as he is without all your wonderful support and knowledge.

Bruce: Thank you for your kind comments.

MICH: Our spouses are saints and incrediable!

fl-don: in the early kda days we only had pat, then terry & susanne

fl-don: otherwise, no info at all

Bruce: Golpher, that might be a good project ... developing a brief history of the KDA and its highlights.  Thanks

Bruce: It would be interesting to know how many of us ended up at the KDA because of Patrick.

TerryW: The KDA was co-founded in 1999 after a trip to the Families of SMA (Spinal Muscular Atrophy) Conference.  They had about 3,000 people living with SMA and 6 of us living with KD there.  They had invited us for a special breakout for Kennedy's Disease.  Not a disease they focused on, but one they at that time did put a breakout together for because some of us with KD had contacted them and were on their mailing list.  At the time, there was no organization supporting Kennedy's Disease, not even the MDA.

fl-don: i'm excited about the sma clinic they are gonna start here in tampa

TerryW: We had previously met Patrick through is Web site.  Terry had also started his own at the same time period.  Both were trying to get the word out about KD and put whatever information we could gather about it on the sites.  Disease Descriptions, genetic counseling information, etc.  Both of us had designs to start a non-profit - it was in our plans, but neither of us had done so yet.

Gopher: WOW! What you have done is AMAZING!!

Gopher: How is SMA different from Kennedy's? I thought they were the same.

Bruce: Yes, the founders worked hard to get this thing off the ground and continue to work hard to keep it going.  Our continued thanks to Terry and Susanne.  They do make a difference in all of our lives.

fl-don: they r the same

Bruce: Spinal Muscular Atrophy and Spinal Bulbar Muscular Atrophy.

MICH: KDA is like no other did do something incrediable


Bruce: SBMA (KD) is different in several ways.

TerryW: After the Families of SMA conference, where we had to distinct honor to meet 22 researchers focused on KD - we walked into the conference room and there they all sat, and there 6 of us with KD sat next to them.  Dr. La Spada, Dr. Merry... and others.  We were so excited and they gave us much hope.  We got to see those who are working on our behalf that before were just names on the Internet and some we had never even known were out there working on our disease.  They were from all over the world.  We must give great thanks to the Families of SMA who helped us get to meet everyone and be the springboard for the KDA.

TerryW: Thanks Bruce - thanks to the current board also because you carry that torch and keep the KDA going as the fine organization we always envisioned it to be!

fl-don: audrey was be4 kda

Bruce: SMA has three types if I remember correctly and is early onset in two of the three.  SBMA (KD) is late onset and has facial and throat symptoms also.

TerryW: Audrey?  Is that the MND in Australia?

fl-don: no, fouhder of families of sma in indiana

TerryW: SMA does have 3 types.  I - usually the babies die before age 1.  II children will live to their early teens.  III Adult - Kugelberg-Welander Disease.  I believe it can also be an adult onset - but usually earlier... and live into adulthood, but affected with similar symptoms to KD, but not the bulbar part - speech and swallowing are not affected like KD.

Bruce: Reminder:  We have about seven minutes left in the chat

TerryW: Audrey Lewis!  Yes!  So Sorry!!!!

fl-don: yup, lewis

TerryW: Audrey founded the Families of SMA (not SBMA, Kennedy's Disease), but she helped support KD in a way she probably doesn't even realize.  She helped mentor me in the beginning stages of the KDA.

Bruce: There are always so many that are in the wings.

fl-don: i remember all these things

TerryW: Her son has SMA and she is an amazingly dedicated woman.  They've got an association with over 3,000 members and have been able to raise millions of dollars.

fl-don: yup, susanne, you are the "wind beneath our wings"

fl-don: ont of the original founders with audrey passed away recently

fl-don: one

Bruce: Well, I find it very inspirational that we started with Patrick's news and found so many instances where he touched so many of us in many ways.  What a wonderful tribute to a great guy.

MICH: Was Audrey very old?

MikeG: I'm back - been talking to a neighbor who just got back from Indiana.  I have to go.  Until next time - watch your attitude!

Bruce: Take care

fl-don: audrey still alive, and young

fl-don: bye bruce

MikeG has left the room.

Bruce: I'm sill here.  I was just saying g.b. to Mike

fl-don: ill c mike later.  i gotta go also.  take care all. bye

TerryW: At the FSMA meeting with KD researchers/doctors, I asked Dr. La Spada if they had more money, could they go any faster with research?  He said "yes".  I asked the researchers right there if we formed a non-profit if they would support us.  They said, "yes".   When we returned home, I set about taking all the email addresses in Terry's Web page for KD's guest book.  It was over 100 names of those with KD or family members.  We talked more with Patrick and he agreed to join forces with us (better we work together than against each other forming 2 separate KD non-profits.)  Patrick sent us all of his list of contacts that had written to him through his web site and I put together an email list.  So then, I emailed everyone on our combined list telling them what we were ab

Gopher: When I finally got around to reserving our room in Atlanta-only 1 left.

TerryW: for support.  I also asked if anyone was an attorney who would volunteer to help us incorporate and get our 501(c)3 pro-bono.

fl-don has left the room.

Bruce: Well, I appreciate everyone's involvement today.  It was good to be on line with you.  Take care of yourselves and say a prayer for Patrick today.

Bruce: Gopher, only one room left or one handicap room left?

Gopher: one room They gave us handicap and we don't need

TerryW: Paul Liu sent us an email and gave us the name of a very large and internationally respected law firm.  I called them, and they agreed to help us pro-bono.  Terry and I had to front about $700.00 to pay fees involved with incorporation to the state, etc...

Bruce: I'll check with John on this.  It doesn't seem right because we had a large block of rooms set aside.  Thanks for the update.

TerryW: We were able to incorporate in August 2000 and received our 501(c)3 status in November 2000.  And that's all they've wrote.. you can see the history of the KDA from there on the Web site and what its grown into.

Bruce: Take care everyone.  This is the end of the official portion of the chat.  If you wish to stay on, please do so.

Gopher: We will give our handicap room to ayone who needs it.

MICH: I'll remember Patrick as one of the great founders and attitude means altitude

Bruce: They chat has been saved.

Gopher: They said no other rooms available

Gopher: I look forward to reading what I missed today.

TerryW: Dr. David Gershuni was our first donator.  He also had KD.

TerryW: Thanks to all of you for your support of the KDA!

TerryW: Take care...