Brett B.
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  • Afton, MN
  • United States
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Brett B.'s Friends

  • Linda Cook
  • Amy Spade
  • Dorothy
  • Amy
  • Lisa G
  • Lakhan sutar
  • Ali Malinowski
  • Jaki Jahnke
  • DIANNA DOS SANTOS
  • michael f massello
  • P C  M
  • Daniel Massello
  • Donna Lee
  • Dana Martin
  • Lynda Wilson

Brett B.'s Discussions

LAL D Study Opportunity with Honorarium (60 minutes over telephone)

Started this discussion. Last reply by Jaki Jahnke Apr 21, 2015. 2 Replies

Subject: LAL D Study Opportunity with Honorarium (60 minutes over telephone)   LAL Solace is partnering with Trinity Partners, a global life sciences consulting firm (…Continue

February 28th is Rare Disease Awareness Day

Started this discussion. Last reply by Veronica English Feb 28, 2014. 1 Reply

TODAY IS RARE DISEASE DAY…Continue

Sebelipase Alfa Clinical Trial

Started Feb 22, 2014 0 Replies

It is hard to believe that it has been nearly three years since I started the Sebelipase Alfa clinical trial.  Before I agreed to participate in the study, I made several phone calls to many of my…Continue

My Path to Being Diagnosed with CESD

Started this discussion. Last reply by Melissa Aguilar Jan 24, 2012. 5 Replies

I was diagnosed with CESD approximately 3 years ago at the age of 38. Almost 20 years ago, I found out that I had elevated AST and ALT enzyme levels in the liver, but no one knew the cause.  I have…Continue

 

Brett B.'s Page

Latest Activity

Brett B. updated their profile
Sep 13
Linda Cook and Brett B. are now friends
Oct 15, 2016
Brett B. left a comment for Lisa Diaz
"Hi Lisa, Welcome to LAL Solace. Please let us know if you have any questions or if there is anything that we can do to help. Brett"
May 25, 2016
Brett B. left a comment for Cat Kiselica
"Hi Cat, Welcome to LAL Solace. Please let us know if you have any questions or if we can help in any way. Brett"
Mar 28, 2016
Brett B. left a comment for Amy Spade
"Hi Amy,  You should not have to wait three months to be tested for LAL D.  Any clinic lab can draw the blood and send it to specific testing locations who actually do the testing for LAL D.  There are two types of tests that measure…"
Mar 16, 2016
Brett B. left a comment for Amy Spade
"Hi Amy, I hope all is well. I am just getting done with work. I am glad that you have reached out. I planned to attempt to contact you tonight anyways. I will try to respond your questions when I get home on my computer."
Mar 16, 2016
Brett B. and Amy Spade are now friends
Mar 16, 2016
Brett B. left a comment for Brett B.
"Hi Dorothy,  I am 46 yo and was diagnosed with LAL D after two years of being sent to just about every specialist that you can think of.  Once I was diagnosed, it was a bittersweet moment.  I found out why my enzymes were elevated,…"
Feb 27, 2016
Dorothy left a comment for Brett B.
"Hi ! Im 42 , and have had high alt and ast liver function tests , after many months the gastro sent me for a liver biopsy after getting a second opinion the pathologist said it was LAL D . I now am awaiting a genetic blood test for it . I am very…"
Feb 27, 2016
Brett B. left a comment for Dorothy
"Hi Dorothy, Welcome to LAL Solace.  Please let us know if you have any questions or if there is anything that we can do to help.  If we do not know the answer, we have access to the top doctors in the world who have studied LAL D and…"
Feb 27, 2016
Brett B. left a comment for Lisa G
"Hi Lisa, You may have already received this information, but if not, from what I understand they Alexion is still working with the Canadian government on getting Kanuma approved in Canada.  The are and will continue to look for patients and…"
Feb 27, 2016
Brett B. left a comment for John Martin
"Welcome to LAL Solace John. Please let us know if there is anything that we can do to help or attempt to answer any questions that you may have. We have numerous resources available."
Dec 24, 2015
Brett B. replied to Lisa G's discussion Please sign my Petition
"Hi Lisa,  I have been out of town this past week.  I just signed your petition.  I will send an email out to our members in hopes to get you additional signatures.  "
Oct 16, 2015
Lisa G liked Brett B.'s discussion Sebelipase Alfa Clinical Trial
Aug 7, 2015
Brett B. and Lisa G are now friends
Aug 4, 2015
Brett B. left a comment for Lakhan sutar
"Over the past couple of weeks, LAL Solace has been overwhelmed by numerous research organizations who are requesting information (interviews) from patients and caregivers from those who are affected with LAL D.  I have received several requests…"
May 18, 2015

Profile Information

What brings you to LAL Solace?
All
Do you or someone you know have a LAL Deficiciency Disease?
Yes
If yes, who is effected by LAL Deficiency?
Myself

Comment Wall (9 comments)

At 3:07pm on July 13, 2011, Brett Billmeyer said…
Welcome and thank you for joining! We hope you will feel comfortable to share your story with us and that this site will be a wonderful resource for you! Mary
At 9:00pm on July 13, 2011, Karen deJong said…

Welcome Brett and thanks for joining!  We would love to hear your story about living with CESD.  Karen

 

At 2:41pm on December 15, 2011, Melissa Aguilar said…

 

I feel very lucky that this doctor performed the test he did.  I didn't even know he was going to do it.  I guess he must of suspected.  I can ask him if he knows of any doctor around your area that is familiar with CESD.  I met with a nutritionist and she is also very familiar with this disease.  She basically said eat chicken (white meat) with out the skin, no milk (use substitute like Almond Milk), if you eat rice eat a little of the brown rice, no fatty foods or anything greasy.  I am trying that with a combination of the gym 3 times a week.  I have only lost 3 pounds and wish it was more but something is better than nothing. 

At 4:12am on May 13, 2013, Grant Montgomery said…

Hey there Brett. Thanks for taking the time to share your story and leave a comment. Since my diagnosis in 2008 I've been trying to gather as much information about CESD as possible. While I've talked to a few of my doctors and read many articles over the years, one thing that seems pretty set in stone about this disease is that there is no real way to treat it, only to diet and exercise in hopes of reducing the chances of heart attack/stroke later in life. Fortunately, this ongoing enzyme therapy done by Synageva seems to be making some progress, so some hope of future treatment can be found there. Hopefully I will be able to participate in any future trials they conduct. 

Cheers,

Grant

At 7:34am on May 18, 2014, michael f massello said…

brett...hanks very much for your response regarding my son's affiction with LAL Solace.  i have forwarded your email to him and a three way connect we have.......thanks again and we will keep you abreast......as we hope you do.

regards,

 

mike massello

At 6:50am on April 21, 2015, Kurt M Freund said…
Hi Brett

I was contacted by http://www.lalsolace.org/profile/JakiJahnke.
She is in need of some assurance
Could you help her
At 2:01pm on May 18, 2015, Lakhan sutar said…

LAL D Respondent Journey

Email invite

 

 

 

 

May 2015

 

 

Email title: LAL D Respondent Journey

 

 

Dear Sir/Doctor/Respondent,

 

As part of our ongoing work on Lysosomal Acid Lipase Deficiency (LAL D) Respondent Journey, sometimes called Cholesterol ester storage disease (CESD) or (Wolman Disease). Market Vision Research is working with Field Global to conduct research about how LAL D impacts patient’s life and how patient’s feel about the medical treatment for this condition. We are interested in patient’s opinions for “LAL D Respondent Journey” for research purpose only. I would like to reassure you that this study satisfies all requirements for a bona fide market research study; there will be absolutely no sales or promotion activities during or resulting from the discussion.

 

In appreciation of you referring the patient (in case of a Doctor) or agreeing to participate (in case of a patient), following Incentive would be provided.

  • Patients would be provided with a token of 140 USD for successful interview through telephone and 240 USD for Facility interview in New York.

 

If you have any questions, please contact us via e-mail at Lakhan.vishnusutar@fieldglobal.in

 

 

Thank you,

Lakhan sutar

Project Executive

Primary Research Management

Field Global

 

At 2:03pm on February 27, 2016, Dorothy said…

Hi ! Im 42 , and have had high alt and ast liver function tests , after many months the gastro sent me for a liver biopsy after getting a second opinion the pathologist said it was LAL D . I now am awaiting a genetic blood test for it . I am very scared and need more information , the gastro called it a "vitamin defiency" which clearly it is not . Any information about you or anyone elses story would be appreciated ! thank

At 2:17pm on February 27, 2016, Brett B. said…

Hi Dorothy,  I am 46 yo and was diagnosed with LAL D after two years of being sent to just about every specialist that you can think of.  Once I was diagnosed, it was a bittersweet moment.  I found out why my enzymes were elevated, but there was no treatment.  In 2011, a biopharmaceutical company called Synageva started a clinical trial for patients with LAL D (aka cholesterol ester storage disease and wolman's disease).  I was the first patient to be infused with a genetically produced enzyme.  I am still on the trial.  When I first started the trial, my liver biopsy showed that I had an extremely fatty liver.  They did another liver biopsy just over a year ago which showed that my liver was no longer fatty and my cholesterol was back in the normal range.  The enzyme replacement therapy clinical trial has shown some impressive results for those who were in the trial.  It has saved several babies who were born with the most severe form of the disease.  Those babies are living happy normal lives with this treatment.  

The medication is introduced intravenously once every other week.  It was FDA approved late last year.  When you get your blood test results back, I would contact someone from Alexion who purchased Synageva last year.  Alexis has a group of nurses who assist patients with getting their health insurance to cover the treatment and attempts to find ways to assist with the co-pay.  This team from Alexion is called One Source.  If you look up Alexion and find a number, you can have them put you in Contact with One Source.  If you do not have any luck, let me know.  I will make sure that I put you in contact with the correct person.  Please let me know if you have any other questions.  I know that it is a scary time right now.  Hang in there.  

Brett

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