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I am looking for other families with Familial ALS who might be able to share information with me. I am curious to know if anyone has heard of any current studies going on that we could possibly be involved in.
As a member of a FALS family, I'd like you to know that you are not alone. There are more FALS out there than you will ever know...
Our family is part of a FALS study at NIH in Bethesda, MD under direction of Dr. Bryan Traynor and Dr. John Hardy. I cannot tell you how important it is to take part of not one, but multiple studies. We also belong to a study at Northwestern U. in Chicago under Dr. Teepu Siddique.
There is nothing we can do about FALS unless all those who are afflicted (and family members) partake in studies and research that can someday lead to a cure! There is no doubt that these very dedicated research teams will one day (with our help) discover one. God Bless You and your family, and all FALS out there.
and participted in trial all to no avail. Only 10% of ALS is genetic, and there are no answers and no cure. With all the sutdies going on there are still no medications that can halt or even slow the progression. I am so very angry that this illness is not as popular as some others. There does not appear to be any aggessive rush to find a cure for the most devasting disease which allows a person to die an inch at a time and become a prisoner in their own bodies kinowing that its only matter of time and so they suffer with the pain just waiting for the end. May God bless all that are afflicted and their families.
Ron
I am 39 years old, married two children, son 14 who has Down Syndrome and a daughter soon to be 7. I have had symptoms since 10/99 while pregnant with my dauther. My mother at the same time started experiencing similial symptoms. she was diagnosed and within 18 months ALS claimed her life. This disease is different in each person it attacts. My story was in the September e-newsletter for the ALS Associaion. Link is on my profile page if you want to know the rest. Too much to type.
Blessings & Light
Tami
Deb, is there any way you could give me phone numbers on who to contact to take part in the studies you are taking part in? My father-in-law was diagnosed with FALS last April and his twin brother was just diagnosed with FALS last Monday. My husband's cousin died of FALS at age 39 2 years ago and his aunt died of FALS at ago 60 3 years ago. We want to do anything we can to take part in research as we are a huge family (my husband has 8 brothers and sisters). Thanks for any information you can give me.
Thanks for your reply. My heart goes out to you and your family. My father-in-law is struggling during his last days of his fight with FALS and his twin brother was just diagnosed with FALS last Monday. We are devastated with the news and want to do all we can to take part in research or help raise funds. I appreciate you sharing your story with me and ask that if you hear of any research studies going on that we could be a part of, please let me know. God bless.
Hi, my name is Danielle & I just wanted to share my story with you, & let you know that you will be in my thoughts and prayers. ALS is a very scary disease, especially when it's in your family.
My grandmother, on my father's side, was diagnosed over 10 yrs ago with ALS & lived maybe 2 yrs after the diagnosis. Her sister, who died before I was old enough to remember, also passed away from ALS, yrs before my grandmother. Then, they believe that their mother may have had ALS, b/c she died paralyzed, but at that time, there was never a diagnosis of ALS.
To go on with my story ... my father, passed away in Sept of 2005 from ALS. I really didn't realize or find out much about it until my father was diagnosed with it, b/c I was older & could understand more. He was diagnosed in October/November of 2003. All of the doctors that he saw in this area told us over & over again that it wasn't hereditary, but there's no way it cannot be, when you think about everyone in my family who has had it. I am very scared for my sister & I, & all of my aunts & uncles. Neither my sister or I have any children (yet), but that also scares me a great deal.
Also, my cousin, my dad's sister's daughter, has MS & has had it for probably 3 yrs or so. She has her good & bad days, but for the most part is able to get around. Then my mother seems to think that down syndrome is associated with ALS or the genes that cause it, b/c I had a brother, 2 yrs younger than my sister, who is 3 yrs younger than me, who was born with down syndrome & 3 holes in his heart. He died at about 6 mths old from the holes in his heart.
There's also a cousin that I really don't know well, but are probably 5th or 6th down the line that has ALS & has a child that is down syndrome.
I wish my grandmother & father would have been more willing to get more research done on them, but I guess when you get diagnosed with it, at least in their cases, it progressed so quick, there's no time to do much.
They are finding new things everyday & hope there is something that can help you in the near future.
You are in my thoughts and prayers, & if you need anything or just someone to talk to, please let me know. I will do whatever I can.
Danielle
Hi,
I have questions about the studies. My Mom's diagnosis was just confirmed. She's lost 2 brothers & a 1st cousin. I was given contact info for Naila Siddique and am waiting for her to all back. What is involved with the studies? We have a large family of siblings & cousins, etc & some want to know if they carry the gene and some don't. I know so little that any advice would be wonderful!
I am sorry to hear of your Mom's diagnosis, I know all too well how it feels to get that news... Naila is one of the best in the "business", very comforting. She will contact you as soon as she can, they are a very busy lab but know the urgency of each FALS case. Have all family backgrounds ready from both sides of parents families for paperwork. Then you will need to gather your family to see who will join up for the study. Naila will need a count for how many bloodkits are needed for your family and will send them out. She will explain in detail and guide you through the study. Remember that during most studies you may never know who carries the gene responsible, but will be told if one is found and go from there. My family is involved at their study as well as NIH in Bestheda, MD under Dr. Bryan Traynor, another fantastic team and several studies going on for FALS. It takes time, patience and understanding. Without taking part in these studies how will we ever find the cause? But, who has time and patience when it comes to FALS? You must have faith in the labs, God Bless You and Yours. Never, ever give up.
Deb
The studies I have been involved with are:
1.) The genetic study at Northwestern with Siddique's. (Bloods drawn for gene study and family genealogy))
2.) Harvard/Mass General a Study for biomarkers (Bloods and spinal tap done)
3.) NIH genetic study for ALS (History and physical/bloods and family genealogy).
4.) Emory university is beginning a study (not approved yet by FDA) for a drug cocktail for familial ALS members who are healthy but have the gene. (it is truly in the beginning stages...they have sent out request for volunteers. I believe they have had more than 200 responses). I have given a buccal sample and genealogy chart. They are currently making up a questionaire to send out to people.
5.) Unfortunately I had to travel to chicago/Boston and DC to volunteer for these. Expenses paid for by me.
I haven't been on this site in months, yet I was asked by ALSA to post the very first entry on this site because of my family history and involvement with the ALS community. Looks like I have a lot of catching up to do....and am ready to jump back in the rink since tax season is over!! My family is known to have lost the most family members to ALS.....at least 30 people. My family carries the SOD1 A4V mutation which is the most aggressive form of ALS. I have personally witnessed five family members succumb to this disease. I have been and am involved in so many studies for ALS. I went through genetic counseling and was tested for the gene....hit the lottery of life after so many years of living in fear!! As Deb mentioned (Hi Deb....yes, I'm going to DC) Nialah Siddique is the woman you need to contact. She is the absolute best!! Any questions I can answer I would love to help....feel free to add me as a friend!!
Laura
Hi Laura,
Nice to see the return of a real Advocate and a person who is very knowledgable about Familial ALS. I have FALS, I think? I lost my father to this disease in 1987. I am not sure but seems like we know about the same, not much. I have been screened for SOD1 and it is hiding or not present. All of my symptoms are very similar to his but I am only being treated as any other person with ALS. I am not complaining but 20 years is 20 years. Glad to see you are going to DC and I will miss you this year. For all of us, please find us any new information.
Leon
We obviously are dealing with familial ALS but the other 3 members of the family had limb onset. My Mom has bulbar onset with frontal temporal dementia. Has anyone had experience with that type??
Laura,
After my father and his brother died from ALS (two of four siblings), we have discovered a total of 18 family members that have or died from ALS (obviously familial). In 1990 we (surviving aunts/uncles/children) sent our blood samples to Dr. Siddiques study but haven't heard anything. Do you know if Dr. Siddiques study would be able to tell those who particpated any information about their particular family?
I am doing some genealogy and it looks like more than just these 18 family members, but hard to confirm ancestors without death certificates. Most genealogy researchers don't list cause of death. Would be interested in a Surname registry of those families afflicted is there one???
Would like to get tested personally, participate in other studies, I know that I am high risk, but afraid that I will not be able to get life insurance, health insurance if told that yes, for certain, I have or will have this dreaded disease. Can I be denied Insurance??? So many questions so few answers.
Hi Cathy:
Glad you are working with the Siddique's. They legally cannot give you information on your family members nor do they contact you with any findings. You should call Nialah directly and speak with her. Another family member did all the genealogy so I'm not familiar with it all....she works in a library so she has plenty of resources!! It seems like way to much of a challenge to me, but I am so grateful she did all that work!!
As far as the genetic testing, you will be required to go thru genetic counseling first. Nialah can help you locate someone near you. It is a very frightening experience, but then so is the fear that you live with 24/7 not knowing!! I hope you never had the familial ALS mentioned in any of your medical records...I never did because of the whole insurance issue. You will have to apply for all your insurance (life, long term disability, etc.) and get the policies prior to any counseling and testing....It took about six months for me to get the insurance as they looked through all my medical files (including my psychiatrist who was the only one that knew about the ALS). They were'nt going to give me the policy upon those findings....fortunately my test came back negative and I was able to get the insurance with the letter from Northwestern. Do you know if your family carries the SOD1 gene? This is the only gene that they are able to determine if you are a carrier. I would assume from the number of deaths in the family that it is.
Are you involved in the familial study at Emory University? You should get involved with them as well. Let me know if you would like this information.
Cathy, I certainly empathize with your situation....it is very difficult to live with that fear!! Please keep me updated and let me know if you need any information.
God Bless You and keep you healthy and strong!!!
Laura
I am a nurse and have been working with ALS patients for many years, in particular on the familial ALS gene studies here at Massachusetts General Hospital in Boston with Dr. Robert Brown. I would be happy to speak to anyone directly regarding any concerns they may have or about the familial gene research we are doing if you contact me directly at my email. My phone is 617-726-5750. We welcome all new families to the study.
yes, I am a family member that has familial ALS in our family,
Emory University is currently recruiting participants for its study titled: Genetic Epidemiology of Familial Amyotrophic Lateral Sclerosis (ALS). If you have been impacted by familial ALS, you may be eligible to participate. For more information, please click here or visit www.clinicaltrials.gov and use the following identifier: NCT00317616
I don't know what bulbar onset is, but my Mom has been diagnosed with ALS w/ frontal temporal dementia. I would love to talk to you.
Hi Niki-
The bulbar onset simply means that it began in the bulbar region instead of the limbs. Bulbar means it started in the neck & throat area basically. My understanding is that they think because it affected her neck 1st, it caused the FTD. She started having some mental decline 3 yrs or so before the ALS was diagnosed. She is now in a care home because Dad can't pick her up anymore when she falls. There were times that she wouldn't know who we were but lately she has been a bit better. She becomes very distracted and it is very difficult for her to say but a few words at a time. Sometimes she surprises us and says a whole sentence. It was difficult getting her to use her walker for example. The dementia can complicate care. I honestly don't know how aware she is now of what is going on and I wonder if that is a blessing perhaps??? Her 2 brothers had limb onset and it makes me wonder if I inherit ALS, which type will I have? Wish I knew more!
What has your Mom experienced?
My mom had frontal lobe dementia with ALS. It was originally diagnosed as Alzheimers until we realized that it was physical. Not many people understand what it's like to live with both the mental and physical problems.
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