Dr. Moris Angulo ~ the man with a big heart

by Janalee Heinemann, IPWSO Vice-President

The approximately 400 families who take their children that have Prader-Willi syndrome (PWS) to Dr. Moris Angulo know first-hand of his great love for our children and adults with the syndrome. They are his favorite patients, and when he walks down the hall at a New York state chapter conference, Dr. Angulo is like a rock star with children and adults running up to him with their arms out for a big hug. Besides running a very busy clinic, Dr. Angulo has support groups for the parents and hosts a big holiday party for the children and adults with PWS each year.

What most people do not know is that Dr. Angulo’s incredible support goes far beyond New York. He helps families from other states in the USA, and families from other countries, especially Spanish-speaking countries. 

Having grown up poor in small town (El Tránsito) of El Salvador, Dr. Angulo has never forgotten what it feels like to be in desperate need. There were people that helped him so that he could go on and get his degrees both in genetics and endocrinology – thus he has paid it forward a thousand times over. 

Dr. Angulo has paid his own expenses to travel to educate parents and physicians in countries such as Cuba, Honduras, Mexico, Chile, and of course El Salvador. He also helps many, many families and physicians via email, and has even hosted some families coming from other countries in his own home. Dr. Angulo has been able to obtain essential medications at times for people in developing countries, and recently, after seeing the only outdated microscope in the entire hospital in Honduras, he was able to convince his own hospital (Winthrop University) to donate a microscope, which he personally delivered.

When I asked Dr. Angulo recently if he ever plans to retire, he said, “No, not as long as I love my work – and I specially enjoy working with my Pee-Wee’s.” (His affectionate name for the children with PWS) We both spoke recently at the Albany hospital and New York chapter conference. The evening of the gala, watching all of the children and adults with PWS dancing, I said to Moris, “Look what a difference you have made in their lives!” Most of us want to do good in this world, but Dr. Angulo has put that “want” into action and has done good around the world.

Rainbows

are people

whose lives

are bright,

shining

examples

for others.

Maya Angelou

Shine on, shine on Dr. Angulo.  The world needs more people like you.

"Come and stay!"

The other day someone asked me whether my (adult) daughter would like to go and stay with her for a weekend.

My heart immediately sank.  All the 'cons' and none of the 'pros' leapt to mind.  How would I explain that in all likelihood my daughter would either eat her out of house and home, or collect up any spare cash lying around, or decide it would be quite ok to have a few drinks, go to the pub, and so on. 

Then it rose again at the thought of someone wanting to be her friend and just 'hang out'.   The woman who asked her is just kindness herself.  She doesn't have much, but she has a great heart.  She and my daughter meet up at pottery once a week and swap stories about their cats.  Living as she does in residential care, my daughter is never out of sight of her caregivers.  It would be heaven to her to think she could go and stay with her new friend.

I felt terribly sad as I tried to explain all the things that would probably go wrong (to be fair, I did leave out the stealing bit) and that since having Prader-Willi syndrome meant there were a lot of responsibilities that everyone had to take, it just wouldn't be fair to expect her to do that.  This kind friend said she understood, but I'm not entirely sure that she did.  After all, my daughter comes across as a fairly reasonable and accomplished person and certainly capable of looking after herself.  And, of course, that's just it, isn't it?  They do come across as being extremely capable and fully able to manage their lives - and the lives of others, come to that!

Our Famcare committee (Family Care for adults living at home) discussed the whole concept of confabulation (story-telling) and how our kids and adults find nothing wrong with elaborating a good story to make it even better, and how they quite simply believe this to be so, and expect you to as well.  (You can see what we wrote about confabulation here, it's also translated into Spanish, German, Italian and Dutch.)  It's often so hard living in the real world...

But we can still go to pottery where, just for a few hours, life can seem normal.

Nominate your PWS Community Champion

Nominate your PWS Community Champion

FPWR Canada

2016 IPWSO Conference, Toronto, Ontario (Canada)

July 20 – 24, 2016

For those who belong to IPWSO member associations and those who are members of other PWS Associations, FPWR Canada presents:

"Nominate your PWS Community Champion"

This is an excellent opportunity for your organization to nominate your "PWS Community Champion" and have this person's name eligible for FPWR Canada’s 2016 IPWSO Conference Prize Promotion.  The prize will consist of a trip for two to Toronto, Ontario Canada and includes airfare, accommodations, Conference fees up to maximum of $2500 CDN.

There are two ways to become a "PWS Community Champion":

Be nominated by your parent delegate for outstanding contributions made to your local PWS Community. (Limited to two nominations per IPWSO member association (country that is a member or associate member of IPWSO) OR Donate $500 or raise $500 and donate the money to IPWSO or your local PWS Association/Organization/Chapter that is a formal entity with PWS as its main cause and which accepts donations

As a "Champion" your name will be entered into a one-time only Grand Prize draw. The prize must be accepted as awarded and the winner will be announced in early 2016.

The promotion is worldwide and open to any PWS Association either with or without charitable status. Who and how you nominate your "Champion" is entirely at your discretion.  FPWR Canada does not accept any responsibility for the nomination and selection process within your country or Association.

The "Champion's" Name and contact information is to be submitted directly to FPWR Canada.

Where the parent delegate submits such nomination, the parent delegate must provide his/her contact information and the association represented.

Where a person who has donated or raised $500, in addition to their contact information, the entity receiving the money raised will be asked to verify receipt of the money as well the person who has donated should submit appropriate documentation that the funds have been donated.

The draw will take place on January 31, 2016 in Toronto. The process will be as follows:

•  Each PWS Community Champion who is nominated or who has raised $500 will be assigned a number and all assigned numbers will be compiled.  Tanya Johnson, 2016 IPWSO Conference Chair and Host will draw one number from all assigned numbers.
• There will be two witnesses to confirm the draw was completed as planned.
• The winner will be notified personally via email by Tanya Johnson and then officially announced via our social media network to all who participated.

We know our world is filled with "PWS Community Champions"!  Get entered today!

In January 2016 FPWR Canada will proudly reward $2,500 CDN to one of our  "Champions" providing them with the opportunity to attend the 2016 IPWSO Conference because - Together We Are "Building Global Community".

Please Note:
By entering, the entrant and any entity involved, accepts any decision of the organizers as final and no correspondence will be entered into and that the rules may be changed at any time entirely at the organizers’ discretion. The entrant further indemnifies and holds harmless the organizers, FPWR Canada and IPWSO and their officials against any claim of any nature whatsoever in respect of this promotion. By entering, the winner authorizes the organizers to publish their name.

Any personal information received during this promotion will not be used for any purpose other than the prize promotion.  FPWR Canada will destroy all information received once the promotion draw has been completed and verified and the winner notified.

The prize promotion will not be eligible for staff of FPWR and FPWR Canada or any member of the Board or officials of IPWSO.

for further information, contact Tanya Johnson

A Letter of Thanks

Dear ...

I am sorry to have forgotten your name.  I expect you have also forgotten mine.  Although perhaps a fragment of your recollection of me remains somewhere in your memory, filed under "unreasonable people".

You visited my house when my son, who has PWS, was 2.  You came at my invitation to conduct a speech and language therapy assessment on my son.  You were friendly and polite. I was delighted to see you as up to that point I had struggled to source speech and language therapy. 

Everything went smoothly until you casually mentioned that you would like to observe my son eating and you produced a rice cake from your bag.  I immediately intervened and said that, unfortunately, my son could not participate in this part of the assessment right now as it was not his meal time and he did not eat outside mealtimes.  

You were taken aback.  You pointed out that rice cakes are healthy.  You said that he would only need to take a few bites.  You argued that he would soon forget one break in his routine.  You said you were sorry, but that you could not wait until his next mealtime as you were due to see other clients.

I said that I was sorry for any inconvenience caused.  But I also refused to give in.  I told you that I felt it was very important to have a fixed meal regime in a house where there was a person who had PWS.  You became exasperated.  Your frustration was obvious.  Eventually you left.  I don't recall if that part of the assessment was conducted at another point or if it was simply omitted.

That happened over 8 years ago.  Everything you said on that day was correct.  I can understand why you were frustrated and why you might have found me unreasonable.  I can laugh now at how I must have appeared to you. I imagine you viewed the appointment as a failure.

Yet I consider it to have been a huge success.  Why?  Because it was the first occasion when I came under pressure to manage my son's diet differently to what I believed to be in his best interests.  It was the first of many occasions when someone else wanted him to have food that I did not want him to have.  This appointment provided me with an opportunity to test my commitment to standing firm in the face of pressure from someone in a position of authority over me.  And I did stand firm.  Having withstood the pressure from you, I became more confident and gained the courage to continue to resist pressure and to take full responsibility for my son's welfare myself.  

Eight years later my 10-year-old son is thin and healthy and we still have a fixed meal routine. He has grown up to understand that we do not eat outside of meal times and we do not eat spontaneously regardless of who suggests we should.  He also understands that if his Mom or Dad makes a rule it will be enforced.

So, genuinely, I am grateful to you.  Even though it was an unintended consequence of your visit, that appointment helped us more than you will ever know.

 Yours... 

PS: My son's speech is excellent now!