Monday, July 31, 2017

Sad Day in the UK

Today is a sad day in the United Kingdom for the British people, as well as for supporters of #CharliesFight in the USA.  The UK political and grass roots leaders regarding rare diseases should strongly consider revamping their system.  There seems to be a lot more questions than answers in this high-profile case.  These ultra-rare muscular diseases must be addressed by the qualified doctors specialized in treating these type of conditions, not by their judicial system.  Doctor Hirano, for example, is instrumental in the life of Mr. Estopinan’s son, “Arturito” and had provided hope for the parents of Charlie Gard.

Regrettably, Great Ormond Street Hospital (GOSH) decided not to perform the recommended experimental medications and disallowed Charlie to fight for his life with the necessary advancements taking place in technology and the exclusive case-studied treatment available.  However, we are confident this case is the first of a long series of followers who will continue to support change for the UK judicial system and for GOSH to reconsider treating rare diseases as they should be!

Art Estopinan conducted his due diligence as a parent advocate and raised awareness to help these heroic parents.  We CONGRATULATE Connie Yates and Chris Gard for their bravery and courage.  They have set the stage for other parents to follow in their determined footsteps and find a solution of hope and confidence in the doctors that dedicate their lives to LIFE!  May Charlie Rest In Peace!

Happy Anniversary!!!!

Celebrating our ONE year Anniversary this month!!!  The Estopinan Group is proud to announce the anniversary of their establishment in Government Relations, Public Affairs, Business Development and Political Consulting.  We've respectfully complied with the congressional rules which require to abide by a one year "cooling off" period for Chief of Staff.  This includes Art's former boss, her MENA Sub and sovern entities.

Some highlights from our first year includes:
  • grateful to work with friends at well established lobbying firm Alcalde & Fay in Washington DC
  • working with Madame Beauzile in sharing her vision and ideas to rebuild Haiti's economy
  • visiting Seoul, Korea where the World Peace Summit took place enhancing US-Asia and Eurasia cooperations
  • honoring Art Estopinan for being named Vice President of International Development at Sexton's Creek as part of their government relations team an Indiana based consulting firm
  • extreme efforts for the economic development of Puerto Rico in working with New World Group Advocacy in favor of tax reform creating jobs on the island and also to prevent the Medicaid cliff
  • support provided to create awareness regarding the human rights violations under Erdogan's Administration currently in Turkey while working with Washington Strategy Group 
  • working with CEO Advisors and Vida & Exito, Mr. Roberto Arguello to inform Members of Congress of devastaing economic impact that the NICA Act would have on Nicaragua's fragile economy 
  • actively raising awarenes for Mitochondrial disease around the world throughTK2Cures; serving as a parent advocate in North Holland at ENMC Conference to give testimony of positive effects of current exp meds for our son, Art Junior and 18 other children around the world; also nucleosides to save #CharlieGard's life 
  • Art Estopinan is also testing the waters to run for the seat of the upcoming vacancy for the 27th Congressional District in Florida  
We sincerely appreciate your support and look forward in continuing to provide EXCELLENT Results! 

Tuesday, July 11, 2017

HOLLAND: In Search of a Cure

An unparalleled experience in the travelled to North Holland this month in hopes of good news while searching for a cure for rare diseases.  Absolutely enlightened in a room filled with doctors from all over the world and individuals who vest their maximum effort in experiments and case studies to essentially help those with rare diseases. 
There are already 18 children living whose tracheostomy’s have been removed because of these experimental medications.  Now there are new optimistic results in processes tried on mice intravenously are setting better expectations for HOPE in saving the lives of more children with rare diseases sooner, since time is of the essence.  Attending this ENMC Conference and further educating ourselves on how treatments are created is impressive and compelling beyond emotions for parents everywhere.   
LONDON:  The Power of Love 

Connie Yates and Chris Gard parents to Charlie who has RRM2B and are working with prominent ethic medical doctors in supporting efforts to save their son.  Imagine a hospital wasting six months of precious time and now removing all parental rights to a child who needs technology to stay alive!   Art witnessed the response from Charlie when these hopeful parents give their son love and affection.  Charlie smiles when his parents rub his cheeks and, at times, opens his eyes to the sound of his parent’s voice. 
There are premier mitochondrial doctors in the USA waiting to help save Charlies Life- since there is NO support in the United Kingdom from doctors or their government.  These parents seek permission to travel with their son for a three-month trial of experimental drugs.  During Art's recent visit to the UK, he assisted this family in conducting rallies and in sharing his positive results from experimental medications with his son Arturito.  We show our support by pleading...                                                                                                                                Let Charlie Go to USA!!!!