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Lamise at the office of Global Ties Akron March 2022 at The University of Akron College of Business Department of Management

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Due to Social Distancing Guidelines, the FUNraising Golf Outing for Lamise has been simplified to the following:

Calling All Golfers!

Mayfair Country Club in Green, OH is sponsoring
\"Golf for Lamise Day\"
Saturday, May 30, 2020

Half of all greens fee proceeds will be donated to
Lamise ElBetar's Fundraiser

This will apply to all golfing that day for 9 or 18 holes

Join in and support Lamise!
Email: [email redacted] for any questions.

$\"31364546_1586556556167162_r.jpeg\"$ Team Lamise hopes that everyone is staying safe while Social Distancing. We realize that this may be difficult for some as we are naturally social beings. Just remember, this too shall pass!

A dear friend of Team Lamise has graciously coordinated an event that we would love to share with you all. We believe that this will be the perfect outing to celebrate after our distancing! Email - [email redacted]

Continue to stay safe!

December 2019

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Hey friends, I hope that you had a happy Thanksgiving! I know it's been.a while since I shared any updates, but it was really hectic in the last few weeks. Just wanted to keep you posted that I am in the airport now heading to Boston for my fourth treatment. Hopefully it will be effective with less side effects this time. I will be having a PreOp appointment to discuss details with my doctors on Dec 12th and a Dentist appointment on Dec 13th to check my dental hygiene. Then hopefully inshaallah if everything went well, I will be having my procedure on Dec 16th. I will keep you posted for updates! Pray for me my dear friends.. Thanks! Much Love, Lamise

November 2019

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Hey friends, It's been a long time since I last shared my medical and personal updates with you. I hope you missed me! :) Yesterday, I went to do my regular lab tests for my doctors to check the efficiency of the oral medication that I am taking currently. I am still waiting for the results and hopefully will get the full report after meeting my doctor here in Akron on November 19th. Then we will share the results with my doctors in Boston to prepare for the next procedure which is scheduled to be during December by God willing inshaallah. And now the fun news, last weekend I attended an early Thanksgiving dinner that is organized and sponsored by Global Ties Akron. This delightful event is meant to be one of the most diverse and generous gatherings in the year. People come from different countries for studying, training or even leisure and set together and have a blissful feast and share the same table with so many American host families. I really enjoyed that day and saw many of you my generous beautiful friends there! Thank you all for all the love and support that I see in your eyes and read in your comments. Please always keep me in your prayers! Much love, Lamise

October 2019

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Hi dear friends, I just wanted to let you know that I arrived to Akron yesterday at midnight. U am sharing with you these nice photos from a very interesting event that my brother and I attended for apple picking in a small city close to Boston. I have never heard about this before, but I am glad that lived this delightful experience to try new things and meet interesting people from different backgrounds. I am settling in and unpacking for now. I am still recovering from the side effects and trying to get back to normal asap. As agreed with my supervisor I will resume my internship this Monday 10/7. Please keep me in your prayers for a speedy recovery and good results.. Thank you and God bless you all! much love, Lamise
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August-September 2019

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Hi friends, I am on my way now back to Ohio. Thank you all for your support and prayers.. Here's my update on my latest doctor visit before leaving Boston. Despite all the side effects and slow progress, the doctors were optimistic, and they asked me to be patient. They said it will take longer time to heal and for the inflammation to go down because of all the stitches. They mainly said that the real results might not be obvious till December. As they said for the stitches to dissolve and the inflammation to go down it won't take less than another 6 to 8 weeks. It's supposed to be improving gradually and they asked me to send them a weekly follow up with photos till next procedure. Finally they also said that they didn't do any surgical procedure this time as they were planning because or the massive and sudden bleeding that I had. Yet they are hopeful that after full recovery from my 3rd procedure they will be able to have a minor surgery along with the injection next time to remove the extra tissue or skin if they found it will be safe. After all they said still the accurate plan for next time will be more clear closer to the procedure date not now. They still need to monitor my progress and my medication doses. They will follow up with my local doctor to reduce the dosage to accelerate recovery. And they said I might need some special lab tests and medication next time a couple weeks before the procedure to hopefully resist bleeding. Thank you and God bless you all! Much love, Lamise
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Dear friends, Thank you all for your prayers and support. I wanted to share with you some updates as just like today a week ago was my 3rd procedure. I stayed in the hospital for four or five days almost secluded from the world as they put me in full anesthesia for 3 days. Actually this time was the hardest so far and I hope it will be the hardest ever. The treatment was so aggressive as the doctors were planning, and I am still in recovery in Boston. There was some complications this time as they had to put me asleep for 3 days, and used breathing tube, and I also had some bleeding. My brother was with me during this process and as much as I am grateful for him I feel it was even harder on him this time. My physicians team are hopeful that the more aggressive approach of Sclerotherapy this time will have better impact hopefully inshaAllah. Of course I can't tell now because of all the swelling and mouth ulcers as well as the bruises and feeling fatigue after all the blood transfusions and anesthesia, but I am hopeful inshallah yet still not sure tell after taking my doctor's opinion that after a couple of weeks it will be better and I will be able to get back to my normal lifestyle again. I am still waiting on scheduling a follow up appointment to check all the symptoms I am having and side effects and also to know what will be the plan going forward inshaallah. Thank you again for all the love and support. Please keep me in your prayers for a speedy recovery. Much love, Lamise
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Hi friends, Just wanted to keep you posted after my latest doctor visit. I met all my doctors on Friday, and almost spent more than 6 hours in the hospital between meeting doctors and finishing admission procedures. My physicians team decided that they will continue what they have done last time doing some injections in my lips and parts of my face. They might also include some minor surgical actions this time depending on what they will explore in the procedure room. I am a little anxious this time because they said they will take more aggressive approach, but I am hopeful inshaallah it will give me better results with less side effects. The procedure is scheduled on Monday early morning around 6:15 am Eastern time. It might take around 4 to 5 hrs. please pray for good results with less pain and side effects. Thank you for all the support that I am getting so far. God bless you all.. Much love, Lamise

I am on my way to Boston for my third treatment. Excited and a little afraid. The doctors are going to give an aggressive treatment, more like the first one. So I will probably have more side affects but also (hopefully) better results. I had to return to the UA student insurance because it covers some out of state expenses but won’t cover my condition. So I am concerned about the cost. Still the doctors want me to stay on schedule. So I am going! I will have my treatment on September 9 and some pre-treatment appointments this week. My brother will be there to help me again. Thank you for your support and please keep me in your prayers. Much love, Lamise

July-August 2019

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Fun at the Rockne's Fundraiser We had a great time at the Fundraiser on Wednesday. I do not have total raised because pledges and payments are still coming in but over $10,000 was raised and additional donations have come in to GoFundMe and Global Ties. We had many great photos taken by Steve Ash, but I am only able to upload three here. I chose them to show the range of people in attendance-from infants to grandmas! Special thanks to all who organized the event particularly Tim Gill, Chris Hamad, Sue Tully, Pat Gill, Doug Hausknecht, Annemarie Crouse and Brenda McHenry, Adriane Clayton and Steve Ash as well as the donors of raffle and auction items.

June 2019

Come meet #Lamise at our ROCKNE’s Fundraiser on Wednesday, June 26, 2019 from 5:00 to 8:00 PM

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Join us at ROCKNE's, 7 Merriman Rd., Akron, OH 44303 on Wednesday, June 26, 2019 from 5:00 to 8:00 PM

-oral auction at 7:00 PM.

Our raffle and auction items include: • Signed Game worn jersey from Champion All-Star Boston Red Sox pitcher Steven Wright • Two tickets to KISS farewell tour concert including meet and picture with the band Cincinnati show Aug 29th , with signed action figures, Donated by the band. • 2 tickets and passes for Lady Antebellum Concert in Las Vegas, airline tickets courtesy of CHIMA Travel (good for any show 8/23/19- 8/31/19), Palms Casino Resort https://www.ladyantebellum.com/ • Case of wine from Milia Winery in Sonoma, CA • 2 tickets/passes to Rascal Flats Blossom show Aug 16th. Donated by the band. • Golf and lunch at Firestone South for 2. • 4 tickets for Peter Frampton farewell tour at Blossom August 8th. Donated by LiveNation. • 2 tickets to Dave Matthews in Cincinnati July 2nd. Donated by the band. • Date Night Dinner or Movie Night Gift Basket • 3 day and 2 night Golf Escape at Landsdowne Resort and Spa in Leesburg, VA https://www.lansdowneresort.com/virginia-resort-about More fantastic items are being added!

Registration is optional! To register, go to Eventbrite.com (in the “event” dropdown” type Lamise.)

According to Tim Gill, “when I first read the story about Lamise in the Akron Beacon Journal, I knew I wanted to help. I met the current members of team Lamise and offered to launch a community fundraiser at Rockne’s , reaching out to my network to help this wonderful young woman”.

All donations are appreciated and tax deductible. Checks made be made payable to Team Lamise fiscal sponsor: Global Ties Akron. a registered non-profit 501 (c3) organization. Tax ID # 34-1433786 Global Ties Akron Suite 233 Quaker Square The University of Akron Akron, OH 44325-9003 Michelle Wilson Executive Director

Co-sponsored by the Cross-Cultural Association at The University of Akron

To learn more about Lamise’s journey, please read the Akron Beacon Journal series https://www.ohio.com/news/20181124/brave-face-ua-grad-student-doesnt-let-medical-condition-stop-her-from-living-full-life

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May 2019
Dear friends, donors and supporters..

Thank you so much for all the prayers and donations that you made during the last couple of weeks while I am in recovery from my 2nd procedure.

This time was actually less dramatic in terms of side effects yet it didn't leave much impact like what happened in the first procedure. Therefore the doctors said they might go extreme again in the next procedure hoping to see better results.

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I am a little concerned, but still hopeful. I am also waiting for the doctors to decide when will be my next procedure to keep the process more consistent. Additionally, I started a new experimental medication called Sirolimus to assist with the sclerotherapy procedures' results and hopefully if proven effective that might accelerate the process a little. Please pray for me to get the best out of it without suffering from its serious side effects.

On another note, I went out a couple of days ago with my brother to cheer myself up a little especially this was the 1st real outing after recovery. I walked in one of the nicest parks in Boston and fed the birds. It was so much fun :)

Happiness doesn't cost a penny..You just need to be grateful and count your blessings!

Struggle is a part of the journey. Even when you don't like it be sure that it leads you to a better path in life!

Thank you and God bless you all!
Lamise

Help spread the word!

UPDATES - LAMISE IN BOSTON-FIRST PHASE OF TREATMENTS AND APPOINTMENTS IN PROGRESS

Lamise had her first sclerotherapy procedure to destroy the abnormal veins on her lips on January 3. Her doctors had stated that increased swelling would indicate that the process was effective. Lamise did indeed have a great deal of swelling and oral blistering. She remained in the hospital for two days and 1 night until the swelling subsided enough for her to eat on her own. She was released on Friday evening and is staying with her brother Mohamed, who left his job in Egypt to come to the US to assist Lamise while she is in Boston. He stayed with her during her hospitalization and is assisting her with meals and her other needs during recovery, which can take more than 10 days. There is still a good deal of swelling and blisters which cause discomfort. She will need to undergo two such procedures before results are known.

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Prior to her surgery Lamise met with a number of her doctors to get a better sense of what is to come.

Her sclerotherapy doctors Chewning and Omari have said that the swelling will decrease gradually during the first couple of months before she will notice some improvement. They estimate that the sclerotherapy for her lips might take one to two years with procedures ideally scheduled every six weeks. However, nothing can be confirmed until after they see the results of the initial procedure.

Dr. Afshar will assist her with masks to help reduce swelling. She may need different custom-made masks, full or partial, throughout the course of treatment and may include some surgical procedures during or after sclerotherapy procedures to make it more effective. To notice any major differences he indicated that it would take 2 years of sclerotherapy and surgical procedures and emphasized she will need dental checkups because any oral infection can be very unpredictable and dangerous. Lamise has an appointment with a dentist on January 16, as mouth sores are probable. Drs. Chewning and Omari do not want her to use the mask after the initial procedure because they are concerned it will cause irritation. For now Lamise will allow the doctors to consult and coordinate when the mask can be used.

She also met with a specialist who has recommended that she receive treatment with Sirolimus, an immunosuppressant that softens the tissues affected. It is used for all types of cancer, and is better described as an \"anti-growth” drug that will help suppress the swelling in Lamise’s face. Lamise is providing more information on her family’s medical background before deciding whether to proceed with this medication. All side effects of this medication are reversible with treatment.

Since Lamise has a fairly rare condition, the hospital cannot provide an estimate of the total costs for her procedures going forward; there are no similar cases on which to base the estimate. So please continue to be generous if you are able and share Lamise’s story.

READ ABOUT LAMISE'S STORY AS FEATURED IN A 2 PART SERIES IN THE AKRON BEACON JOURNAL:

https://www.ohio.com/news/20181124/brave-face-ua-grad-student-doesnt-let-medical-condition-stop-her-from-living-full-life

https://www.ohio.com/news/20181125/brave-face-ua-community-rallies-to-help-grad-student-with-rare-condition

AND IN AN ARTICLE FEATURED BY CHANNEL 5 NEWS- CLEVELAND

https://www.news5cleveland.com/news/local-news/oh-summit/university-of-akron-student

Lamise Elbetar: A Beauty Within NEEDS YOUR HELP to Shine Brighter-  Please meet Ms. Lamise ElBetar a native of Cairo, Egypt. Lamise is studying for a masters degree at The College of Business Administration (CBA) at The University of Akron.
$\"31364546_1541196849588536_r.jpeg\"$ (Lamise is shown here with her twin sister in Egypt)  Lamise is a very articulate, intelligent, talented and friendly young lady. One that brightens the room when she enters. Unfortunately, Lamise was born with a congenital problem, called a venous malformation. While only a small bump when she was little, this has continued to grow and has now resulted in a severe facial deformity, or as she calls it “a facial difference”.

As might be expected, Lamise has had a challenging life. She has faced bullying as a child and as an adult. Employers in Egypt discriminated against her because of her appearance. They didn’t care about her skills, work ethic or intelligence; just her looks. Lamise accepts who she is and chooses not to cover her face despite hurtful comments. The support and love of her family have nurtured her positive attitude.

In 2017, she touched the hearts of a small number of faculty, friends, and staff in the CBA and a community group, Global Ties Akron. The always amazing Akron community and university networks kicked into place to form TEAM LAMISE. Team Lamise has been busy networking to find medical expertise for this rare medical situation and is happy to report progress in moving forward to assist Lamise improve her health outlook and to help minimize the growth and size of her facial deformity (or facial difference).

This journey has traveled so far from Cairo, Egypt to Akron, Ohio to Boston, MA. A prominent local physician, Dr. Ananth Murthy, of Akron Children’s Hospital shared his expertise to preliminarily evaluate Lamise’s medical situation and then contacted colleagues at Boston Children’s Hospital who have put together their own team of specialists. After their initial evaluations, the team of Boston experts has offered some exciting and hopeful possibilities- but we need YOUR help to make it happen.

Lamise’s Recap of August Visit, Boston Children’s Hospital:

“With God blessings & your prayers I had a fruitful visit to Boston Children’s Hospital, in August, where I met with the doctors helping me to explore all possible medical options to treat my congenital facial venous malformation (VM). This visit was set up by Dr. Ananth Murthy, of Akron Children’s Hospital, who as a specialist in venous malformations, has generously given me his support and expertise.

Thank you to all members of  #Team_Lamise, who helped me in different ways to facilitate my Boston visit. Special thanks to Global Ties Akron, and to Mary Kissinger, (High School Friend of Marketing Chair, Dr. Deborah Owens) who served as my gracious host in Boston. Mary was my guardian angel who met me at the airport, hosted me at her home, and accompanied me on every single doctor visit where she took detailed notes. I will always be grateful for Mary’s hospitality, making what could have been a very stressful trip, really enjoyable.” (The cost of the August consultation with a variety of specialists is estimated to be $14,000- the bills have just started to arrive.)

Good news on options:  The medical evaluations have determined it is preferable to address the situation AS SOON AS POSSIBLE, to avoid potential additional growth and associated health problems, down the road. The medical team at Boston Children’s Hospital recommended a nonsurgical option of Sclerotherapy. Sclerotherapy uses interventional radiology to inject a solution directly into abnormal veins, hence destroying them. This therapy will help to reduce the distended portions of my face, while also preparing it for any possible future surgical interventions.

The next stage of my journey is a return to Boston Children's hospital in December and January to begin the initial round of Sclerotherapy procedures.

It will be a very long and expensive process so I greatly appreciate all the emotional, logistical and monetary support that has been offered. The cost of the Sclerotherapy Procedure is expected to be $40,000 - $45,000.   This advanced medical treatment is not available in Egypt. As an international student, my student health insurance does not cover pre-existing conditions. My family, like most, is not able to afford these enormous costs, especially as my father is deceased, and my mom is retired. I can’t express enough the gratitude I have for the opportunities I have been given in America, and in particular, the Akron Community.

IN AKRON and in the US, as nowhere before, I have been welcomed, supported, and given educational and employment opportunities.
I appreciate any financial contribution you are able to make to assist in funding for my medical journey. Thank YOU for joining TEAM LAMISE it is only with your help that my dreams are coming true.

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Here is an interview with Lamise - watch to learn more about her journey:

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Help a Beauty within shine brighter

Still $19,816 to go. Help us build momentum.