Posted in Awareness

Rare Week In Washington DC

I had an amazing experience participating in Rare Week in Washington DC.

I arrived Feb 25 and left Feb 29, 2020.

Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

I arrived empowered and I left empowered and my advocacy on on fire and I was exhausted and yet rejuvenated all at the same time.

This was my first time on Capitol Hill and it will not be my last.

I met so many amazing people.

I also participated in a focus group which was the main reason why I went but the opportunity cane to go a few days earlier and I took advantage of that time.

hosted by the Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, is designed to educate and activate advocates and to foster relationships within the community.

900 RARE DISEASE ADVOCATES

393 MEETINGS WITH CONGRESS

227 PATIENT ORGANIZATIONS

1 AMAZING RARE DISEASE WEEK!

I spoke on Capitol Hill, Met one of my Senators for Ohio.

Spoke up about Osteonecrosis and how we need better treatment options like prp injections,stem cell injections, clinical trials and getting new treatments covered by insurance also I discussed osteoarthritis and how it can be debilitating as well.

I passed out 200 copies of my Osteonecrosis booklet to people on Capitol Hill thanked several for issuing proclamations for November 29 becoming Osteonecrosis Awareness Day in many States my goal Is all states.

I then toured that amazing and beautiful town of our nation’s capital.

Took a night tour that was amazing until a lady tripped and grabbed me causing me also to go down.

Blasted my knee and it looks like a water balloon but thank God it’s not broken.

Rare Week Capitol Hill February 2020

I had an amazing experience and I am so grateful I got the opportunity to go and I look for to being in Washington DC more often.

Posted in Bone Health, Government, Immigrants

Separation At The Boarder

I understand we need border protection and laws need to be enforced,but have we lost our sense of  decency , humanity and love and compassion for human beings in general?

The traumatic effects of this separation on these young children, which could be devastating and long-lasting.

Our government has the discretion in our laws to ensure that young children are not separated from their parents and exposed to irreparable harm and trauma.

Family is the foundational element of our society and they must be able to stay together. While protecting our borders is important, we can and must do better as a government,  a society, we need to find other ways to ensure they are safe  Separating babies , toddlers and or children from their mothers and fathers is not the answer and is immoral.Its also very cruel as you have many that may not even understand what your saying they are coming here for a better life, or escaping cruelty in their own home land ,they come here for many reasons yes illegally but instead of detaining them , separating them, lets  feed them and send them home. They don’t need prosecuted unless the are true criminals.

Teach them how to come here the correct way.

I also wish parents would also understand that attempting to gain access to the USA illegally raises the risk that you will lose your children , and that they will also put their kids first and either leave them behind with other family or don’t attempt to come here illegally.

I also feel that if the children are separated from their parents they should be able to know the child’s whereabouts at all times and the same goes for the parents.And the government knows at all times where both are.

It’s a form of emotional abuse of children , and can result in serious emotional and behavioral problems, including depression, lack of attachment or emotional bond to a parent or guardian, low cognitive ability, and educational achievement, and poor social skills.

 

There are ways to come to this country legally

 

For starters, you must meet certain qualifying requirements in order to apply for legal residency. You can’t just “want” to and follow through. USCIS provides a variety of categories that qualify people. The categories are VERY narrowly defined and exclude MOST people.

1.) If you qualify for an IMMEDIATE immigrant visa number.

2.) If your spouse or child is in the US.

3.) You are the fiancee of a US citizen.

4.) You have asylum in the US.

5.) You are a refugee.

You can also be sponsored by an employer if he/she can prove that your job can not be done by an American.

Please note that these categories have MANY exceptions. Thus, simply having a child in the US generally has a LOT of restrictions – which is often overlooked when arguing about anchor children. You can’t just have a kid here and become an immigrant. Instead, you’ll have to wait about 18 years before you can apply (or, more precisely, before your child can file a petition on your behalf).

You can’t also just come here and apply once you are in the country (there are some exceptions to this) because doing so is generally seen as immigration fraud because you entered as a tourist but had the intent to immigrate.

 

https://www.usa.gov/enter-us

 

Far too often the trend in our society is for people to be separated from each other, to be cut off from the great mass of humanity, and in doing so to be dehumanized a little bit more with each step.

Glued to our cell phones when in a room full of people , and not “people ” I’m talking family, friends etc…Cars have taken us off the streets, where we used to greet each other and stop to chat.  We are becoming so detached that we are losing our sense of common decency for all people.

 

“If you want others to be happy, practice compassion. If you want to be happy, practice compassion.” – Dalai Lama

 

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