Tuesday, September 2, 2014

Children’s Cancer Clinic Opens in Reno Led By Pediatric Hematologist Oncologist Dr. Caroline Hastings (Addi and Cassi’s doctor!)

October 5, 2012 by  
Filed under Featured Stories, News

Dr. Caroline Hastings with Addi and Cassi's experimental medicine called cyclodextrin

Many people do not know that Addi and Cassi’s primary doctor is not a geneticist, metabolic specialist, neurologist, or cholesterol expert but is one of the nation’s leading pediatric cancer doctors.  Her name is Dr. Caroline Hastings and she is the medical director for the Hematology/Oncology/Bone Marrow Transplant unit at Children’s Hospital & Research Center Oakland (CHRCO) and runs The Children’s Specialty Center of Nevada, under the Cure 4 the Kids Foundation.

Hugh and I first met Dr. Hastings in Reno about 5 years ago when we were desperately searching for a diagnosis for the twins. While other doctors were unable to help us find a diagnosis, Dr. Hastings continued to work with Hugh and I to get answers as to why the twins were losing their ability to walk and talk.  Even though they did not have cancer, she was committed to helping us continue to do testing.

I remember when a world renown lysosomal storage diseases (LSD) doctor at Thomas Jefferson University told us that Addi and Cassi did not have a lysosomal storage disease and was refusing to do more testing on the twins’ blood samples. After doing all her research, Dr. Hastings believed the twins had an undiagnosed LSD and was arguing with him for more testing.   Ultimately she was right – the twins were suffering from a LSD called Niemann Pick Type C disease, a fatal cholesterol condition.

When we found a potentially lifesaving therapy for Addi and Cassi, Dr. Hastings was the first to step in to help even though helping would take a lot of personal time outside of office hours and she would not be compensated for it.  There are not many doctors in the country that would help parents file treatment protocols with the FDA or learn about a genetic disease outside of their specialty area.  But Dr. Hastings did just that and had the confidence to be the first doctor in the world to try an experimental sugar compound on the twins called cyclodextrin.

When your kids are dying of a rare disease or leukemia or a brain tumor, Dr. Hastings is the type of dedicated doctor you want on your team!  We have met countless doctors due to Addi and Cassi’s illness and we can assure you that doctors like Dr. Hastings don’t exist in many places anymore.

Dr. Hastings is so dedicated to helping kids and families, that for the past 20 years she has traveled from Children’s Hospital & Research Center in Oakland to Reno (even during 3 pregnancies!) on a weekly basis to help treat patients in Northern Nevada. Most of the local children with cancer and are too weak to travel from Nevada to California to get access to special research cancer protocols Dr. Hastings runs. So she brings access to cutting edge cancer treatments to the kids here, which requires her to stay overnight in Reno and be away from her own children.

If Dr. Hastings is not in the clinic treating patients or writing FDA treatment protocols for us, she is writing books to assist physicians and nurses who are training to treat kids with cancer or blood disorders.  We always joke about when she sleeps – we’re told she doesn’t and we believe it!

We are very fortunate to have insurance but many families are not so lucky. While most doctors won’t see patients without insurance, Dr. Hastings has helped take on several cases. Hugh and I are always amazed at how selfless she is. She wants to give kids and their families in Northern Nevada the kind of treatment that they would get if they traveled to a major medical center specializing in chronic and severe disease in children.  The only reason we are able to treat Addi and Cassi in our local community is because of Dr. Hastings. Every day we are incredibly grateful for Dr. Hastings and all she has done for our family and countless children in our community.

Children’s Specialty Center of Nevada on Facebook

Cure 4 the Kids Foundation on Web

Children’s Hospital and Research Center Oakland – Children’s Cancer information

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Rare Disease Day Logo and Ribbons – Patient Advocates Join The RARE Team!

February 17, 2012 by  
Filed under Featured Stories, Rare Disease

Here are the Rare Disease Day logos for 2012 from the Global Genes Project, the leading rare disease advocacy organization for the rare disease community.

Since Rare Disease Day 2012 falls at the end of February each year, the date for 2012 is Feb. 29 (leap year).

Wear jeans or demin on Rare Disease Day 2012 — Wear That You Care!  Post pictures of you wearing jeans or denim on the Global Genes Project Facebook page and join the #1MILFORRARE team — let’s unite 1 million people who care about rare so we can have our voices heard!

For the official rare disease blue denim ribbon, contact amyg@rareproject.org.

 

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RareArtist.org – Rare Art Created by Rare People to Support Rare Disease Awareness

August 20, 2010 by  
Filed under Rare Disease

What a great idea — a new website to showcase Rare Art created by Rare People to support Rare Disease awareness.  The Kakkis Everylife Foundation has launched RareArtist.org for artists of all ages affected by a rare disease.

There are almost 7,000 rare diseases that affect more than 25 million Americans — many of them are children like Addi and Cassi who suffer from Niemann Pick Type C disease which causes childhood dementia and is fatal.

The EveryLife Art Contest was established to empower artists affected by Rare Diseases to express their unique struggle with a rare disease.  An art competition is being held and is open to all artists affected by a Rare Disease ages 5 and older.

Check out RareArtist.org today and upload your art!


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Social Security Disability ‘Compassionate Allowance’ – Only For Those Who are Impoverished?

March 5, 2010 by  
Filed under Health Care Policy

Today I called the Social Security Office in Nevada to find out about the compassionate allowance program for our twins. Last month, the Social Security Administration added 38 more conditions to the already 50 rare diseases and cancers designated for compassionate allowance, which provides expedited review of disability applications from people with severely disabling conditions. Niemann Pick Type C disease was added to the list and after reading the press release I assumed our children would qualify.

After navigating  through the Social Security automated voice activated phone system for 30 minutes and losing the connection, I finally managed to get through to a live person. In the State of Nevada, you can select a Social Security appointment by telephone or in person. I chose the telephone appointments. Apparently, we can’t set up back to back appointments so I made them for March 18th and 19th at 10:32am.  All appointments in our State are done at 2 minutes after the hour. Only the government could come up with such a thing.

I was told that each appointment would be 1 ½ hours long to fill out the information. I tried to explain that our applications will be identical except for one minor change – one application will say Addison and the other Cassidy.  Still two appointments (unless I decide cancel — I’ll get into this below).

Social Security had some quick questions for me – how much is our annual income (I could not recall the number on the phone) and do Addi and Cassi have siblings (No).  They also wanted to know if I am “working.”  I am not officially working a job outside the home but I do spend all my time “working” to find treatments for our girls and we spend a significant portion of our money/income on funding research and experimental treatments.  The call was all very vague but I made the appointments to get real facts on the program in order to share with others in my situation.

A friend of mine who has a child with a different lethal rare disease told me this morning that with her husband’s unemployment and her part-time job, they make the ‘big bucks’ and don’t qualify for the program. I was shocked. I guess you have to be completely impoverished to get any assistance — little to no income from what I understand.  I now want to find out the truth as to who gets what so that people are not wasting their time pursuing something they obviously don’t qualify for. If a family with three kids (one who is dying) and who are on unemployment and working part time jobs don’t qualify, who does?

When a major announcement is made in the media touting how the government is helping kids who are dying, they might want to put in a caveat that says, “you can only qualify if your parents make X amount per year.”  I am looking at spending 3 hours of my valuable time to find out we make too much money.  I am certain we are making too much money but the way they promoted the program made it appear that all qualify.  How many people is this program truly helping?  And why would they want to accept and process two applications from me?  What a total waste of government time and resources!

For many people applying for benefits, the Social Security Disability process is a slow one. Being awarded benefits can take many months, often years. I was told our case would be reviewed within 20 days of filing the applications. A typical time frame for review is 120 days. I was told the “child rate” in the State of Nevada is $674 (this is the maximum amount per child).  Who could live off of $674 a month and why not 675?

The National Organization for Rare Disorders (NORD) helped get the list expanded. I am going to contact NORD to see if they know what the income limitations are for this program and why the income number was not put into the press release.

If you have a rare and terminal disease and want to find out about the compassionate allowance program, click here to go to the SSA website.  They won’t tell you if you qualify. I suspect most people don’t.  I found a helpful State-by-State list of Social Security Offices on a Huntington’s disease website if you wish to pursue it.

In addition to Niemann Pick Type C disease, some of the newly added conditions for compassionate allowance include Ataxia Telangiectasia, Hurler Syndrome Type IH, Idiopathic Pulmonary Fibrosis, Neonatal Adrenoleukodystrophy, Sanfilippo Syndrome and Wolman disease.

Here is a quick list of the new Compassionate Allowance conditions:

  • Alstrom Syndrome
  • Amegakaryocytic Thrombocytopenia
  • Ataxia Spinocerebellar
  • Ataxia Telangiectasia
  • Batten Disease
  • Bilateral Retinoblastoma
  • Cri du Chat Syndrome
  • Degos Disease
  • Early-Onset Alzheimer’s Disease
  • Edwards Syndrome
  • Fibrodysplasia Ossificans Progressiva
  • Fukuyama Congenital Muscular Dystrophy
  • Glutaric Acidemia Type II
  • Hemophagocytic Lymphohistiocytosis (HLH), Familial Type
  • Hurler Syndrome, Type IH
  • Hunter Syndrome, Type II
  • Idiopathic Pulmonary Fibrosis
  • Junctional Epidermolysis Bullosa, Lethal Type
  • Late Infantile Neuronal Ceroid Lipofuscinoses
  • Leigh’s Disease
  • Maple Syrup Urine Disease
  • Merosin Deficient Congenital Muscular Dystrophy
  • Mixed Dementia
  • Mucosal Malignant Melanoma
  • Neonatal Adrenoleukodystrophy
  • Neuronal Ceroid Lipofuscinoses, Infantile Type
  • Niemann-Pick Type C
  • Patau Syndrome
  • Primary Progressive Aphasia
  • Progressive Multifocal Leukoencephalopathy
  • Sanfilippo Syndrome
  • Subacute Sclerosis Panencephalitis
  • Tay Sachs Disease
  • Thanatophoric Dysplasia, Type 1
  • Ullrich Congenital Muscular Dystrophy
  • Walker Warburg Syndrome
  • Wolman Disease
  • Zellweger Syndrome


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Rare Disease Idea Leads ‘Ideas For Change In America’ Competition by Change.org

March 3, 2010 by  
Filed under Health Care Policy

Ideas for Change in America is a competition that empowers citizens to identify and build momentum around a diverse range of ideas for addressing the challenges our country faces.

From January – February 2010, more than 2,500 ideas were submitted and voted on by 100,000 people across the country. The top three rated ideas from each issue category qualified for the final round.

Right now, 25 Million+, It is time to care about rare disease is rated as the #1 overall topic! Let’s help it stay at the top.  Vote here!

The 10 most popular ideas will be presented to relevant members of the Obama Administration, and Change.org will subsequently mobilize its full community to support a series of grassroots campaigns to help turn each idea into reality.

Please take a few minutes and cast your vote on behalf of the 30 million Americans affected by rare disease — that’s 1 in 10 people in the US living with a chronic or life threatening rare disease!   It’s time to care about rare!

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