No better way than story-telling to reach the hearts and souls of the public by sharing with them the trials and tribulations of Special Needs kids and adults and their families portrayed in a large number of award winning films, like My Name is Khan, I am Sam, Ghadi, Rain Man, Lorenzo’s Oil, Memory Keeper’s Daughter, Temple Grandin, Forrest Gump and Extraordinary Measures. In October, 2014 at Centre Sofil, a moving and successful 5 day festival dubbed “Special People at the Movies” was attended by over 6000 middle and high school children, therapists, teachers, celebrities and the press and members of the community.

World Autism Awareness Day.  The LIGHT IT UP BLUE 2015 campaign organized by OpenMinds and the AUBMC Special Kids Clinic shone joyous and bright lights on autism by illuminating both the Pierre Abu Khater building that houses the ASKC clinic and the main AUBMC hospital in brilliant hues of blue! Thanks to efforts by OpenMinds board members, these two buildings are now listed alongside the following landmark buildings that also participated in the Light It Up Blue campaign, including the One World Trade Center, La Basilica de la Sagrada Familia, the Empire State Building, the China Millennium Monument, 30 Rockefeller Center, Himeji Castle, Taipei 101 Tower, the Helmsley Building, and last but not least, The Great Sphinx and Great Pyramids of Giza!

A blue Easter Egg Hunt at Yuppie Park for special kids, their siblings and parents attracted over 200 visitors who celebrated, played, had fun and competed for chocolate Easter eggs from Patchi, and sundry gifts and vouchers. This last event was in celebration of World Autism Awareness Month.

 The CARE (Consultant Advocacy for Remedial Education) team, with support from OpenMinds, had an amazing summer filled with fun at a CARE summer camp catering to kids with autism and other special needs ages 9 to 21. The main objective was for a holistic experience in a structured, supportive and positive environment promoting integration of special kids into society. Young adults volunteered at CARE in order to give these special children a fun filled summer experience much, like their regular peers. Aids and special educators attended a 3-day intensive training course administered by professionals. The course covered working with special needs kids and managing their activities, in addition to first aid skills. All participants received certificates of attendance.OpenMinds supported this wonderful activity and provided for all sport equipment, training program expenses as well as financial aid for some participants.While in camp the students participated in an array of educational, recreational and social activities covering: social skills, educational and outdoor games, field trips, horseback riding, arts and crafts, recreational skills, swimming, sports, music therapy, cooking, and vocational guidance! To enhance the experience most activities took place in an integrated setting outside the center. The summer camp finale was a three-day sleep over at a resort in Tyre, which the children and staff greatly enjoyed. 

We lit it up blue at the ASKC clinic in the Pierre Abu-Khater building on April 3 for World Autism Awareness Day. The campaign was organized by OpenMinds and the AUBMC Special Kids Clinic (ASKC) in conjunction with the ADrising team with kids, their siblings, parents, friends and staff.Blue paint handprintsThe building shimmered blue every night for a week.  The event was immortalized with blue paint hand prints on a white canvas that now has pride of place in the clinic! The evening ended with merriment, blue cupcakes, lively music and the release of 100 Blue Balloons into the cool Beirut evening sky.

Thanks to Dar Group and ProFinance, and the hard work and ideas of dedicated board members, a conceptual design, as well as a proposed feasibility plan were finalized this past spring.Fundraising dinner with Purple Capital GroupPurple Capital Group organized a Fundraising Dinner in Monaco.  All proceeds were donated to OpenMinds this year. The event was held at the Yacht Club of Monaco on the 20th of May where 200 guests from the international community and Lebanon attended the dinner, dancing away the night to dynamic live music, amidst entertainers and a tombola that kept on giving!!  We had generous donors that evening, most notably Bob and Tamar Manoukian.View of the Gathering in Monaco

OpenMinds Patient/Family Packages update: It is only September and we have assisted over 237 families so far. In four years more than 1.2 million dollars have been set aside and are being spent to aid families in getting accurate diagnoses, genetic counseling/prenatal diagnosis, and to cover hospitalizations and game-changing early intervention for premature babies, children on the spectrum and others with neurogenetic and neurodevelopmental disorders.Shahd & her brotherSecond Episode…-Shahd Khodr, the daughter of Ali, a Syrian refugee from Idlib. She is a 3.5 year old girl with Hurler disease we introduced to you in our previous newsletter. Hurler syndrome causes facial deformities, stunted development and intellectual disability.  After securing free enzyme replacement from the Genzyme/Sanofi compassionate program, which exceeds $ 300 000/year, we took steps for a permanent solution, bone marrow transplantation from her brother.   The cost for this exceeds $55,000.  A generous personal donation from Mrs. Ghida Rabbat propelled four other donors to come forth.  Shahd is presently at AUBMC being conditioned for a bone narrow transplant (BMT) from her brother.  To be continued…..

Thanks to the American Community School and Bridges to Ability the kids from the AUBMC Special Kids Clinic (ASKC) and the Lebanese Down Syndrome Association (LDSA) celebrated Halloween. We had an afternoon of pumpkin decorating, face painting, magic tricks and fun filled entertainment.  

We enjoy supporting and taking part in activities occurring within and outside the community!  We would like to thank Mr. Ali Wehbi for choosing to dedicate his official Guinness Book World Record to autism during his AUTISM TOGETHER run from March 31 to April 2, 2018. During the awareness week in April themed “Accepting Differences”, the Tres Saint Sacrament School in Jbeil invited OpenMinds for a talk on autism aimed at primary school students. OpenMinds shared presentations, videos and questions on the topic.Awareness School sessionThank you College Notre Dame de Jamhour Class of 2018 for promoting and supporting OpenMinds during the highly successful end of year event, “SHINE ON”. Inclusion starts at nurseries! OpenMinds was proud to be part of the Syndicate of the Professional Nurseries in Lebanon’s Conference “For a Sustainable Education in Early Childhood’ in collaboration with the Lebanese German University in April 2018. Innocent Minds Nursery and OpenMinds hosted a presentation on the importance of integration and early intervention.The syndicate of the Professional Nurseries in LebanonHigh Hopes, a sponsor and strong supporter of OpenMinds in its mission and activities established a specialized early intervention therapy center in Dubai in December, 2017. The center has benefitted from the experience and support of the ASKC, and, they are off to an amazing and stellar start.

In four and a half years 316 families and their children have received medical assistance with sound diagnosis, genetic cpunselling, family guidance and support, therapies and other services. The ASKC cohesive unit made up of parents, therapists, physicians, clinic assistants and nurses have accompanied special needs children on their journey of progress and joy, overcoming challenges, together.  Their celebrations, trials and tribulations are now permanently etched as a valuable measure of the ASKC-OpenMinds-Community experience.Follow-up News-episode 3:  -Episode 1: A  2.5 year old refugee child assisted by OpenMinds since 2015 was diagnosed with Hurler disease and received  free medical care at ASKC and AUBMC.  She successfully received enzyme replacement therapy, generously donated by the compassionate care program, courtesy of Sanofi-Genzyme. –Episode 2. In 2017 she underwent a successful bone marrow transplant from her younger brother. A third pregnancy was monitored early with prenatal diagnosis generously donated by CentoGene. The parents now have a second bouncing baby boy free of disease.  –Episode 3:  In 2018, the child and her family were repatriated to the United Kingdom where she is thriving and receiving continued medical care…happy end of story.

Today, the likelihood of a child being diagnosed with any form of a neurodevelopmental condition is 1 in 65. These special individuals end up having to cope with a systematic lack of provision of rights, resources, and services. They face exclusion at all levels of their daily lives and find themselves struggling to defend their basic rights. Their right to normalcy becomes more and more evasive.The #ana3adi campaign was officially launched by OpenMinds during its 6th annual gala in April 2019, with the screening of five short movie clips addressing the yearning of “special” individuals to be treated as regular peers. The campaign highlights the necessity for genuine acceptance and inclusion of Special Needs Individuals in schools and in the workplace.In a world where everyone is trying to be different, many yearn to be “regular”.

We are in the throes of transformation and conflicts yet to be resolved.  These will affect all our lives in Lebanon and the region, particularly services to families in need.  The prevalence of special needs is 1/10 children in ordinary times.  During times of conflict and unrest, this figure becomes 1 in 5 children!  The new number of families with one or more children with special needs assisted by OpenMinds packages in 2019 is 75. To date, this number is now 415, with many waiting in the wings.In 2019:75% of patients assisted at OpenMinds were males and 25% were females from all over Lebanon.

During 2020, OpenMinds launched two donation campaigns one during World Autism Month and one at the end of the year. OpenMinds strives to raise awareness of Special Needs Children in Lebanon.OpenMinds – دعمكن ضروريTuesday, December 1, 2020OpenMinds – Your support is neededWednesday, December 2, 2020Autism AwarenessWEDNESDAY, APRIL 1, 2020

OpenMinds supports 5655 special needs services at the AUBMC SPECIAL KIDS CLINIC (ASKC)….OpenMinds funds advances in local clinical/basic science of special needs at the NEUROGENETICS (NG) lab at AUBMC…Nothing has dampened the spirits of the ASKC or NG teams at AUBMC.In spite of restricted access, our doors stayed open, and we have soldiered on.ASKC OpenMinds (OM) Clinical Packages: Success Stories: OpenMinds – Elie's Journey (part 1) | Success StoriesJanuary 28, 2021OpenMinds – Elie's Journey (part 2) | Success StoriesJanuary 28, 2021Thank You OpenMinds | Joud's Journey | A mother's testimonyJanuary 28, 2021ASKC/Neurogenetics Research: Publications in 2020/early ‘21 totalled 15, exceeding all averages.Grant applications submitted based on OM funded work number 9!Research Highlights:-Two novel Lebanese autism genes identified, UBLCP1 and UBR4.-‘RitaT’, a new and rapid screening tool for autism was validated in Lebanon and is translated into Arabic.-Negative impact of screen time on severity of autism in the Lebanese is published.-Effectiveness of flupirtine to treat mice affected with CLN3 disease with sex differences defined is in print.-Eye tracking and gender specificity in autism uncovered and published.-Protective impact of breast feeding on autism in Lebanon has been shown.-Hot of the presses… The CLN6 batten disease variant prevalent in Lebanon is  being investigated in the Cln6nclf mouse model…Fig 1a.Fig 1b.Visual Cliff test: 28-week old male Cln6nclf mice (n=3) could not discriminate between a safe zone and crossing over the cliff to the unsafe zone, spending equal time due to a significant loss in vision.  Cln6nclf male mice spent more time over the cliff vs. age matched normal males (black bars) and less time in the safe zone (grey bars) (unpublished) .The 2 autism genes identified affect vital protein degradation machinery in the cell, but differently.   It turns out that defective UBLCP1 gene can rescue and may be developped to treat defective UBR4.  Fig 2. Both UBLCP1/UBR4p impact proteolysis or protein breakdownCentral panel: Normal UBR4p is an E3 ligase. UBR4p substrates TRPV5p & ACLYp are linked to ASD. Normal UBLCP1p binds Rpn1p & dephosphorylates Rpt1p & inhibits proteasome assembly and activity.Left panel: Mutated UBLCP1 does not lead to increased proteolytic cleavage.Right panel:  Mutant UBR4  impacts proteasome degradation via protein recognition/Ub-transfer from E2-ligase to proteins & targets them for degradation ↓Ub- proteins &↑TRPV5p &↑ACLYp.Fig 3. Mutated UBR4p results in cell microtubule destabilization & cell disruption Cells stained with antibodies to β3-tubulin of neuronal cells with UBR4 tag (red) and β3 tubulin (green). Cells over-expressing  normal  fragment exhibit a tubular pattern (upper panel) BUT a diffuse pattern lacking normal elongated cells in cells expressing mutant UBR4 domain fragment (lower panel). Yellow arrows point to cells with mutant UBR4 causing microtubule destabilization & cell disruptionFig 4. Mutated UBLCP1p as a potential strategy to treat mutant UBR4Left: UBR4 mutation leads to reduced protein degradation, and affects protein recognition/UB transfer from E2-ligase to targeted proteins, OR directly targets proteins for degradation. This causes accumulation of proteins.  Right: Expressing mutant UBLCP1 rescues mutant UBR4 by ↑proteolysis (red arrow) &↑UBR4p activity (dashed orange) & ↑Ub-protein levels.