Sunday, December 4, 2022

Zero Mac and Cheese

January 28, 2008 by  
Filed under Recipe Submissions

VEGAN MACARONI AND CHEESE Sauce: 2 cups water ¼ cup raw cashews 1 (4oz) jar pimentos, drained 1 cup nutritional yeast flakes 2 tablespoons cornstarch 1 tablespoon fresh lemon juice 1 ½ teaspoons salt, or to taste ½ teaspoon garlic powder ½ teaspoon white pepper Combine all ingredients and blend until completely smooth. Transfer mixture to a medium saucepan and whisk constantly over medium heat until thickened, about 5 to 6 minutes. Cook 1 lb. of macaroni according to package directions. Combine with sauce and put in a 9” x 13” glass pan. Top with bread crumbs. Bake at 375 degrees for 20 minutes.

The “Lucky 200” Health Care and Drug Club

January 27, 2008 by  
Filed under Health Care Policy


Are you lucky? Did you know that of the 7,000+ diseases that affect humankind, treatments for only about 200 are being actively sought by pharmaceutical and biotechnology companies?  Crazy, isn’t it?  As it turns out, it costs about $1 billion for a pharmaceutical company to bring a new drug to market so they are entirely focused on return on investment. It also can take from 10+ years to get them to market.

This is why we see drugs like Viagra coming on the market and not medicine that can actually cure people who are sick. Which bucket do you think you might end up in someday?  The 200 Club or 7,000 Club?   Why are the political candidates not talking about this topic? You can have all the healthcare insurance you want, but if there is not a drug for you when you become sick, what will you do?

Nearly 47 million Americans, or 16 percent of the population, are currently without health insurance according to the National Coalition on Health Care.   Even if we were able to provide all these uninsured people with health care, the concept of universal health care will never work in a broken system that is full of insane regulations and bloat.

If politicians like Barack Obama or Hillary Clinton want to know what is wrong in the medical system, they should ask people like us who are in the midst of a medical battlefield and trying to win a war.  You can’t understand what is going on until you are fully immersed in this nightmare like we are.  The first thing I would tell them is that $160,000 dollars per year for an experimental drug for two children is a little excessive, don’t you think?

We have only been navigating the medical system for three months — here are some other major problems.

  • Lawyers: everyone in the medical system is afraid of lawyers and paralyzed as a result. The system can’t move and doctors won’t take risks because lawsuits is all they can see.  They are afraid to dispense an aspirin to kids who are dying.  Seriously.
  • Insane Federal Regulations put the fear into Institutional Review Boards (IRBs): we need tort reform on a national level. I had someone smart tell me that what is happening in our system is “criminal.” Doctors and scientists are sick of IRBs and goverment regulations because they can’t get anything done
  • The IRBs Themselves – They are insane: The red tape and paperwork are standing in the way of getting to cures and treatments.  Everyone in the system is complaining about the IRBs – they were designed to help people and protect people and now they are killing people. By the time researchers get IRB approval, their grants have run out. I have been in an IRB nightmare for 3 months with the NIH and our local hospital to get simple samples of urine and blood from healthy kids to compare to Addi and Cassi.  There are plenty of other insane examples that I will post in future blogs.
  • Wrong Incentives – Publish or Perish: Research labs are competitive — all they can think about is their next grant and putting food on the table. Many are running the same experiments and do not talk or collaborate well. There is tons of waste in the system because of lack of data sharing.  Scientists are afraid to put ideas out for fear of ridicule by others scientists and before numerous tests are done 50 times to confirm they are not crazy. Getting information out to the medical community and public is a major bottleneck – the incentives for science needs to change! Future Nobel Prizes should not be given out to scientists or researchers who are not collaborators
  • Technology – many of the people in medicine are still folks who “dictate” and don’t know what a Blog is. Old timers are resistant to change but have the most experience, new scientists are technology savvy but need exceptional tools to make their lives easier. The right kinds of technology need to exist to make it easy for the medical industry to do their jobs
  • Collaboration:  it’s practically nonexistent across the entire medical field
  • Cross Sharing Among Disease States: It’s not simply collaboration between scientists in a particular disease state, it’s creating collaboration between scientists working in different disease states that have connection points
  • Therapies Now: how do you translate what is in petri dishes and mice into potential therapies for people with diseases?  How do you take existing drugs and test them against disease to see if they work or could be used “off label.” Studies in labs with mice do not translate well for people who are dying
  • Case Manager: I am working full time to move the needle for Addi and Cassi. What happens if you have cancer and don’t have an advocate to help organize all of this or can’t get out of bed? There could be a whole business spun out of this idea and people would pay for Case Managers
  • Money: If you want to live, start saving now. You better be prepared to shell out as much money as you can in a broken system.  Not only do you need insurance, you need your own money ….. and lots of luck!

Understanding Genetic Testing & Sequencing – It’s Greek To Me

January 19, 2008 by  
Filed under Genetics


We have recently learned from the Mayo Clinic that our twins Addi and Cassi have one Niemann Pick Type C gene mutation that has been identified in their bodies — it’s called Exon 12 DNA Change 1920delG.   This DNA sequence change (or deletion) is a “known pathogenic mutation in the sterol-sensing domain.”   The 1920delG mutation leads to a premature stop in the synthesis of the protein after 655 residues, instead of the normal 1278 residues.  We were told that because of the position of Addi and Cassi’s mutation, the lab at Mayo could only get clean DNA sequencing in the forward direction.  We are still trying to figure out what all of this means.

The second mutation in the twins have so far has proved elusive to Mayo Clinic researchers.  At this point, Hugh and I need to have our Niemann Pick Type C genes on Chromosome 18 sequenced in order to try identify our family’s second mutation.  Next week, we will have our blood drawn and sent to Mayo for analysis and hope to find the second mutation.  By finding our genetic mutations, we can learn clues about Niemann Pick Type C disease.  We have also found out that Addi and Cassi do not have a common NPC mutation — that mutation is called I1061C.  It gets more complicated for us and the mystery deepens.

I wonder if I have the Exon 12 DNA Change 1920delG in my body?  Or is Hugh the carrier of this faulty gene?   Which one of us has the gene that is proving elusive and hiding?   How did this even happen to us and our family?  This mystery goes back thousands of years and is so bizarre and so complicated that I simply don’t want to think about it anymore tonight.   God only knows what will happen in my dreams.  Each night, I am afraid to close my eyes for fear as to how my unconscious mind will take over  — my nightmares are beyond comprehension.

Moonlight Garden Gala Fundraiser Committee

January 13, 2008 by  
Filed under 2008 Fundraisers

Event Co-Chairpersons

Maria Muzea (H) 849-1603 (C) 843-3364
Nancy Stoltz (W) 784-9400X118 (C) 830-7789

Guest Speakers & Entertainment
Lisa Williams, Chair (H) 852-4671 (C) 925-212-8789
Chris Hempel (H) 849-1924
Hugh Hempel (H) 849-1924 (C) 338-4844

Sponsorship & Table Sales
Lisa Cybulski, Co-Chair (H) 849-1485
Lori McGarry, Co-Chair (W) 827-7293 (C) 225-1369
Monica Gore (H) 852-1608 (C) 742-1555
Clelie Arroyo (W) 722-8983
Ellie Lopez-Bowlan (H) 849-3855 (C) 846-2151
Jennifer Baker (C) 830-8691
Yvonne Murphy
Mary Pat Zahler (H) 831-8613
Toni Cassas (H) 825-2607
Lisa Gallaway (H) 229-4074 (C) 925-878-1362
Jack Beattie (H) 849-9040
Sandy Noack (C) 925-202-7992
Dani Canziani, Coordinator (W) 849-3091

Silent Auction
Annie Dunn, Co-Chair (H) 851-3440 (C) 527-2383
Debbie Barber (H)775-852-5973 (C)775-842-5290

Lisa Williams (H) 852-4671 (C) 925-212-8789
Kelle Venezia (H) 852-9462 (C) 415-342-1271
Denise West (H) 852-4416 (C) 223-0269
Andrea Knapp (W) 688-5724 (H) 813-4870
Elaine Walker (H) 851-3120
Justine Figurski (C) 848-1369
Jessie Perkins (H) 333-6777 (C) 219-7018
Mary Shipley (H) 971-9774 (C) 544-4459
Hilary Hewlett (H) 787-9395 (C) 848-9750
Marisa Randazzo (H) 424-6685 (C) 741-3314
Cara Hamm
Janet Beattie (H) 849-9040

Dani Canziani, Coordinator (W) 849-3091

Live Auction
Elaine Walker, Chair (H) 851-3120
Lisa Williams (H) 852-4671 (C) 925-212-8789
Hugh Hempel (H) 849-1924 (C) 338-4844

Marketing Materials
Amy Berry, Chair (W) 784-9400×102 (C) 338-1668
Andrea Knapp (W) 688-5724 (H) 813-4870
Jan Houston (W) 849-9444 (C) 250-5976
Susan Rowland (W) 850-1764

Event Planning & Logistics
Robin Brockelsby, Chair (W) 359-6733 (C) 690-5327
Dale Davis (H) 849-0689 (C) 745-6703
Jan Houston (W) 849-9444 (C) 250-5976
Erin Pieretti (W) 784-9400×106 (C) 771-9691
Felicia Griffin (W) 788-2131×113 (C) 315-4567
Carrie Carano
Teresa DiLoreto-Long (W) 359-3000 (C) 691-2770

Elaine Walker, Decorations (H) 851-3120
Donna Johnson, Decorations (H) 849-3021
Nancy Simmons, Decorations (H) 846-1656
Rita Sanford, Guest List/Invites (C) 376-0669
Christy Pappas, Event Program (H) 849-4165 (C) 224-7619

Montreux Golf Tournament
Loni Wolf, Chair (H) 853-7697
Jeannie Sewell (C) 287-0884
Lisa Reicken (C) 232-4969
Hugh Hempel (H) 849-1924 (C) 338-4844

Volunteers – Event Day Set/Strike
Robin Brockelsby (W) 359-6733 (C) 690-5327
Rita Sanford (C) 376-0669
Kristi Sprinkle (C) 771-0639
Kellie Labarry (C) 741-7029
(Recruit New Members)

Volunteers At Large:
Ann Rosevear
Dottie Molt
Liz Terry

Life Versus Freezers

January 11, 2008 by  
Filed under Stem Cells


If you were a frozen embryo, would you rather die in a freezer or donate your life to science? It seems like a very easy choice to make, don’t you think? I have never had to think much about the stem cell debate before Addi and Cassi were diagnosed with a rare and fatal disease but now stem cell research is at the forefront of my mind.Stem cell research could someday save  children who are suffering from Niemann Pick Type C and other deadly childhood diseases.

I ask any person who is opposed to stem cell research to put themselves in our position — our children are on a path to losing their minds and will suffer a most horrific death if we don’t accelerate scientific research across the board, including into stem cells.

I tend to fall into the more conservative camp on a number of moral and political issues but I have been thinking about my vote in the upcoming 2008 election. I want to support candidates who will work to allow science to move forward while addressing the main moral conundrum.  Because we are faced with this horrible situation, I am quickly understanding that the Bush administration’s position on this subject is simplistic and naive.

All I can think about is Addi and Cassi ending up dead in a freezer …just like these embryos. Why? If embryos are "life" it seems to me that these embryonic "children" would be honored to give up their lives to save other children like Addi and Cassi who in turn might end up giving their lives to try and solve one of the most complex brain mysteries in science. Children should not be in freezers – left to die as an embryo or dead from a disease that can be solved. It’s time to let scientists and researchers do their jobs — to save lives, including yours, your children and your grandchildren.

The following is a quote from a letter to the editor of the Reno Gazette Journal in January 2007 written by Lawrence Goldstein, a Howard Hughes Medical Institute Professor and Department Of Cellular and Molecular Medicine Director for UC San Diego Stem Cell Program.

"It’s unfortunate that those opposed to embryonic stem cell research have jumped to the wrong conclusion once again about the recent report that a new cellular reprogramming method might eliminate the need for embryonic stem cells. There are two important facts about this exciting recent advance in reprogramming adult cells: first, this advance was possible only because of work done with embryonic stem cells; second, like most stem cell advances, we are still early in our understanding of the implications of these findings.

What remains certain is that thousands of embryos will die in the coming years in freezers across this country and around the world. There is abundant genetic diversity in those frozen embryos that could be a lifesaving source of novel therapies for devastating diseases. Scientists have never argued that embryonic stem cells have the only medical potential. Scientists do say that policymakers should not tie the hands of science by allowing us to look through only one door in our quest for new disease treatments."  Read the entire letter here.

Clearly, this issue is extremely complicated. I do not support the creation of embryos purely for scientific purposes. However, the harsh reality is that 10s if not 100s of thousands of embryos are currently being stored in freezers for "family building."  Of those, many will never turn into children like Addi and Cassi and thus will be destroyed by fertility clinics. As a society, we have already accepted the creation of embryos outside the body for the purpose of creating life and in vitro created children are filling up classrooms everywhere. The possibilities of embryonic stem cell research are limitless. These embryos, who are now living under a death sentence in freezers, should be entitled to a right to life by living on in others through helping solve complex medical problems.

Finally, let’s hope we can create stem cells from other reprogrammed cells so the embryo debate can be over (Newsweek’s most recent article).

Next Page »