PKU Together We Can: Palestine with the World!

Phenyketonuria (PKU) is what is known as an ‘inborn error of metabolism’, a rare genetic disorder. Specifically, PKU is caused by a defect in the enzyme required to break down the amino acid Phenylalanine. Without the correct treatment, individuals with PKU suffer severe medical consequences including irreversible brain damage, intellectual disability, and neurological abnormalities like seizures and tremors. Personality and emotions are affected as well, causing many kids with untreated PKU to exhibit behavioral and social problems. In some cases, untreated PKU can lead to early death.

Worldwide, prevalence of PKU is approximately 4:100,000 newborns.  In Palestine’s West Bank, incidence of PKU was measured in 2017 and found out to be 35.6 per 105 newborns (1 : 2800) less than that in Turkey which is the highest in the middle east (1:2600) but Larger than average Arabian countries (1:6000).  In the West Bank and Gaza, there are currently about 570 individuals with PKU, of which 230 are in the Gaza Strip. It’s also important to note that children born with PKU never ‘grow out’ of the condition, since there is no cure. Management must be sustained for the duration of their life, since the risk of brain damage exists at all ages. 

Receiving adequate care for this condition is made more difficult because Palestine has been under Israeli occupation for the last 74 years with restrictions on the movement of medical supplies. It is much worse in the Gaza Strip has been under siege for the last 17 years and already been through protracted military operations, the last of which was in May 2021, where the Al-Remal healthcare laboratory and clinic was damaged by bombs. This clinic provided all of Gaza’s newborn screening for genetic conditions and is led by the only doctor who serves PKU individuals in Gaza. Prior the bombing, newborn screening was shut down for over six months because neither Ministry of Health provided test kits.  There is only one specialist in metabolic conditions in all of Palestine. 

The problem we are trying to solve is to prevent brain damage in PKU children in Gaza and the West Bank. To properly solve this, we would need to address these 4 major problems PKU communities in the region currently face.

• Reliable delivery of medical food:  579 PKU children (that we know of) in Palestine are without reliable access to medical food. The MoH in the West Bank stopped sending medical food to the 230 PKU children over 3 years old in Gaza in 2017. 4 children died (out of 120) in Gaza. In the West Bank, the Ministry changed the medical food formula causing rejection by many children.

• Long Delays in Newborn Screening in Gaza. Standard newborn screening stopped entirely in Gaza last June, 2020 and has resumed haphazardly. 6000 babies area born in Gaza each month; one newborn every two months suffers from PKU.  

• The lack of information regarding PKU within the PKU parent community impacts their ability to feed and care for their child(ren) and become their child(ren)’s best advocates.

• Medical professionals and nutritionists in the area have outdated information about this condition and limited access to training and accreditation. 

Although we cannot tackle all four of these points head on, by starting with the last two points, we can empower parents and healthcare providers with the knowledge they needed to properly care and advocate for children and adults with PKU.

The figure above illustrates the ‘gold standard’ of care for people with PKU. It was developed decades ago and continues to successfully prevent the adverse effects of untreated PKU, including brain damage. In countries with robust economies and medical infrastructure, one would focus on these three components of care first:

#1) To identify PKU as early as possible and avoid adverse effects; all newborns must be screened for PKU

#2) Medical formula is the backbone of PKU treatment. This formula is needed for the entirety of their lives

#3) To ensure that each child is getting the correct dose of medical formula, their blood phenylalanine levels should be tested regularly, usually monthly. This requires regular check-ins with doctors and nutritionists

These three requirements are essential in preventing irreversible brain damage in children with PKU. However, given the conflict, economic and political climate in the Gaza Strip, West Bank and the region, providing any of these requirements reliably has been almost impossible. Our solution therefore, is to foster long term change in the region by empowering parents and doctors with the education needed to develop a supportive PKU community. We will essentially be working backwards from the figure above, and focus on these three main components first:

#6) Developing an empowered community of PKU parents and children who support one another and press for their right to medical care — this is key. #4) Providing them with the best specialized medical care available worldwide including nutritionists and metabolic specialists with a deep understanding of the complexity of metabolic disorders to ensure that each child can reach their full potential. 

#5) Since individuals with PKU cannot consume high protein foods, learning how to prepare low protein meals will bring them health, bring the PKU community together, and encourage sponsorships.

Our Specific Solutions:  

• Access to outside doctors, nutritionist, and specialists We will be partnering with TebFact.com, an online medical service in Arabic that allows patients to consult specialist doctors worldwide through text chat, audio or video calls. In addition, we will customize TebFact by creating a special portal for the Gaza and West Bank PKU community. Providing courses to healthcare professionals and parents in the region,  where they can learn the international PKU standards of care. 

• Availability of low protein foods and recipes We have started a cooking show called ‘PKU Mommy’s Kitchen Palestine’ on Youtube, where we plan to upload new creative recipes every two weeks. In the show we explain how to find ingredients in local grocery stores, and show the audience how to prepare each meal. A PKU mom based in Gaza is the chef — her experience will help foster a supportive community and we hope her bravery will help that community feel pride as they gain the voice.

• Empowered, supportive PKU community of Parents and Children Educating the parents on a PKU child’s condition is probably one of the most important steps in the figure above. A parent is the best advocate for their child’s rights. With a clear understanding of all the essential aspects of this condition, parents can organize themselves to petition for change in their community, even in Gaza. For example, in winter of 2021 when medical food had run out, mothers and fathers from Bethlehem protested in front of the PA Ministry of Health in Ramallah. In response, the PA MoH successfully procured the medical food required to meet their PKU children's needs.

According to our survey of 126 PKU families in Gaza, 70% of the PKU families have more than one child with PKU. We seek to directly and meaningfully improve the lives of all 570 PKU children in Gaza and in W.Bank, and those yet to be born. Our partnership with TebFact will address the PKU families’ needs by providing outstanding medical care and attention from outside the locked borders of Gaza, giving the PKU parents what they need to stabilize their children’s health and empower their advocacy. 

• Our PKU courses will provide healthcare professionals in that region with updated information about this condition. 

• The cooking show will help provide the community with a refreshingly positive way to  learn how to prepare low protein foods that their PKU children will love – and may their whole extended family will love too. 

Currently, the U.N.'s Health Cluster is prohibited from consider the needs of Palestinian children born with PKU, even though the Health Cluster's charter specifically states that “Human suffering will be addressed by the Health Cluster Partner Agencies wherever it is found with attention to the most vulnerable in the population, such as children, women and the elderly. The dignity and rights of all victims will be respected and protected.” As outside medical professionals begin care for Gaza and West Bank PKU patients, we hope the Health Cluster will join with the PKU-TogetherWeCan team to form a consortium to address the resource needs of this chronic problem.

Our team is representative of the Palestinian PKU community in the following ways:

•  In 2018, a year after the Palestinian Ministry of Health stopped providing medical food to PKU children over the age of three in Gaza, a family in Gaza asked Rebuilding Alliance’s to purchase medical food to help their two children. When a doctor in San Francisco rightly concluded there must be more than two, Rebuilding Alliance formed a PKU Tiger team that bring persevering professional together every Sunday in partnership with the Youth Vision Society in Gaza City in the Gaza Strip, and the PKU Charitable Association in Bethlehem in the West Bank. We work with both Palestinian Non-Governmental Organizations to crowfund and we’ve delivered seven shipments of  medical food to them for distribution to Gaza and West Bank PKU Families;

• As a result, both NGO partners have expanded their services to PKU families in Gaza and the West Bank, respectively.  Dr. Raed Hindi, the founder of the PKU Charitable Association, draws upon person experience:  he and his wife have one son with PKU.  

Our team has been working hard to understand the needs of those we’re serving in the following ways:

• We surveyed 120 PKU families in Gaza to learn about the problem, quantify it, and begin to engage the community;

• Our team lead who is Palestinian from Jenin, won a scholarship to pursue a masters degree in Public Health at the University of Malaysia and has received approval for his masters these survey of the Gaza PKU Community. This will soon be underway, with results in a few months’ time.

• The PKU Mommy’s Kitchen - Palestine is based in Gaza City, and the lead chef is a PKU mom.

• As soon as we learned that a specialist in metabolic conditions had completed her double fellowship at the University of Toronto, we asked her to guide our seminars for parents and medical care professionals.  These Zoom calls were well attended. 

• So far donors are sponsoring six cans of medical food each month for eleven PKU children in Gaza.  We learn about each PKU child’s needs and aspirations when monthly donations grow enough to invite sponsorship of yet another child. 

The design and implementation of our solution is meaningfully guided by the communities’ input, ideas, and agendas in the following ways:

• As we create the PKU portal in TebFact, we’ll test it out with PKU Parent focus groups in Gaza and the West Bank.  At those focus group events, we’ll be serving the food we developed in our PKU Mommy’s Kitchen YouTube show – a great way to engage the community. 

• The PKU Mommy’s Kitchen YouTube show will begin to screen before live audiences of PKU families.

• The Bethlehem experience with the PA MoH gives good insight into the value of parent empowerment.

• When the parents, the medical community, or the local medical food supplier are seeing a problem, they explain the challenge and ask us to help. Rebuilding Alliance brought a Congressional Staff delegation to meet with the distinguished P.A. Minister of Health Dr. Mai Kaleh who promised to do her best to send medical food to Gaza before the expiration date would result in throwing the cans away.

• Our team is in regular contact with the PA Palestinian Ministry of Health and though  less directly, with the doctor in Gaza who heads-up newborn screening and PKU testing, the challenges faced by the PKU community are heartbreaking with no easy solutions.  Please note: Rebuilding Alliance always maintains full compliance with the U.S. anti-terrorism laws and our solution set is designed to meet those constraints.

• In this last year, Rebuilding Alliance was granted membership in the U.N.’s Health Cluster for the region.  We’re surprised that our Palestinian partners were blocked from joining.  We’re getting to know the five or six other NGOs who can sometimes provide medical food or gluten-free low protein flour to the PKU community.

We have tried every which way to address major challenges with limited success. The Horizon Challenge offers a new way forward.  Instead of dividing potential allies by pointing out failures, this can bring us all together to support PKU children and the community of PKU parents who are teetering on the edge of survival. 

The Horizon Challenge gives us a positive way to bring the truth forward, a way that is fair to all concerned, beneficial to all, and builds goodwill and  friendships — this is a good way to build the critical mass needed to give these PKU children a healthy future

Here are the specific barriers we hope the Challenge will help overcome:

• Financial = $756,000 / year is needed to buy medical food for Gaza's PKU Children.  The estimated cost of online medical care $5/visit/month + free lab tests.  Twice-monthly production cost for PKU mommy’s Kitchen is currently $2000/month so $24,000/year. The cost of seminars and staffing for each NGO partner may reach $25,000 per partner NGO.

• Technical = newborn screening system in Gaza is manual and there is only in one lab in all of Gaza to test 6000 newborn babies a month

• Political/legal = (1) Gaza is blockaded, (2) the Gaza Government is designated as terrorist by the US Government, making it impossible for Americans to resolve that newborn screening problem in any direct cooperation with the Gaza Government, no matter how good the doctor (3) the PA MoH and the Gaza MoH don't really work well together (4) neither the PA MoH nor the Gaza MoH provide the needed medical food bank for Gaza's PKU children

• Cultural = stigma, lack of support once PKU children are born, consanguinous marriages among refugees from the same villages

• Market barriers = hard to find low protein foods in the public markets because the number of PKU children has relatively small buying power.

— Oxford Prof. Nabeel Hamdi

“To do something big — to think globally and act globally — one starts with something small and one starts where it counts.”  — Oxford Prof. Nabeel Hamdi

• As people — including healthcare professionals — outside the Gaza Strip and West Bank hear of the scope of the problems these PKU families face, they will be moved to help —  that means more donation revenue for PKU sponsorships.

• As the PKU Mommy’s Kitchen videos become popular, companies will want to sponsor, bringing more revenue to purchase the six cans of medical food that each PKU child needs each month;

• As more people hear about these challenges, they as constituents, will crowdfund and also press their elected officials to appropriate government funds for medical food aid and testing — that support will solve the most costly challenges.

“To do something big — to think globally and act globally — one starts with something small and one starts where it counts.” 
                                                            — Oxford Prof. Nabeel Hamdi

The solution is not new to many places around the world, but it will be a remarkable improvement in the West Bank and especially in the Gaza Strip. While it is important to address the immediate, often emergency, needs of PKU children, we strive for a sustainable solution. That is why our solution starts by:

• Educating and empowering families with PKU children, so they may effectively petition their government and doctors to provide their children with reliable access to medical formula and health care  

• Giving families personal and immediate access to reliable advice worldwide through the Tebfact online medical provider network and to local PKU-friendly recipes

• Providing courses to healthcare professionals in the Gaza Strip and the West Bank. Doing so will help them improve their quality of care, promote the importance of regular phenylalanine testing, and ease of access to medical formula

This could be catalytic — we expect it to enable broader positive impacts:

• As people — including healthcare professionals — outside the Gaza Strip and West Bank hear of the scope of the problems these PKU families face, they will be moved to help —  that means more donation revenue for PKU sponsorships.

• As the PKU Mommy’s Kitchen videos become popular, companies will want to sponsor, bringing more revenue to purchase the six cans of medical food that each PKU child needs each month;

• As more people hear about these challenges, they as constituents, will crowdfund and also press their elected officials to appropriate government funds for medical food aid and testing — that support will solve the most costly challenges.

We meet with PKU families and conduct focus groups and yearly surveys gathering information about their thoughts and needs. In these surveys we obtain information such as 

1. How many children in the family have PKU?

2. Do these children see a dietitian, or who cares for the family's medical problems 

3. How long has it been since the child received any formula?

4. How often the child receiving blood tests to monitor Phenylalanine levels

Totaling to about 30 survey questions. By comparing the survey results to the international standard for PKU care, we can monitor the families general progress and help them overcome challenges.

Our solution uses two main technologies, TebFact and Youtube. 

TebFact is an Arabic app whose purpose is to provide patients with medical consultations from doctors and specialists around the world. A great solution for communities in Gaza and the West Bank, where phones are more common than computers, and where medical specialities are harder to come by. TebFact also hosts a variety of detailed articles in Arabic for parents and doctors to learn about many common medical conditions. Through our partnership, we will include more information pertaining to the PKU.

The PKU Mommy’s Kitchen— Palestine Video Series via Youtube.  Youtube is a popular and free way to share videos virtually. It's a great way to reach as many people as possible worldwide. We want PKU communities in Gaza and the West Bank to be active participants. With Youtube families can organize their advocacy more effectively and share low protein food recipes. 

Rebuilding Alliance is committed to providing equal employment opportunity for all persons regardless of race, color, religion, national origin, marital status, political affiliation, sexual orientation or gender identity, disability, sex or age. We ask our team to take very seriously the priority Rebuilding Alliance places on being welcoming of all types of people, all ages, abilities, cultural groups, economic status, and sexual orientation. 

We intend to serve neglected communities in the West Bank and Gaza. So far our approach has been to raise funds via crowdsourcing and donations. The buzz generated by this Horizon Challenge is sure to help generate awareness for this cause as well. In the long term by educating parents about PKU and the proper care required to successfully manage the condition, we hope this will spark grassroots advocacy locally and worldwide that will motivating  governments to support them by assuring reliable access to medical formula and regular testing. 

Given the blockade of Gaza, the families really cannot pay for services.  Therefore, we hope that buzz from the HorizonPrize + Worldwide medical care via the online portal + Youtube cooking videos that build health, pride, and community -> Crowdfunding and sponsorship success -> grassroots advocacy success -> donor government support that pays for medical food in theWB and Gaza and automated newborn testing in Gaza.

PKU Together We Can win GlobalGiving.org Bonus competitions providing matching grants to procure medical food. As more people donate, they become advocates too.  We encourage one-time donors to sponsor a PKU child by becoming recurring donors. We intend to cover our costs initially by raising funds via crowdsourcing and donations. In the long run we hope the governments will help support these communities directly. 

We hope to take advantage of Google AdGrants nonprofit advertising credits to expand our donation efforts by incorporating social media as a vehicle to bring broader awareness. 

We've raised nearly $200,000 to date on GlobalGiving.org, at weekly fundraising tables at SF Bay Area mosques (and sometimes also at churches and synagogues) and though the OneDaysWage.org matching grant.